Just joined a couple of days ago

[DeuceNova]

It took time to get me authorized, but here I am.

I've RLS all my life (I'll be 64 this summer). Along with RLS, I have type II diabetes (diagnosed about ten years ago), GRD, IBS (irritable bowel syndrome), and a wrecked neck and back.

My biggest "problem" is that the diabetes and IBS are contrary to each other. EX: diabetes says only artificial sugars, high fiber and raw vegetables. IBS says NO artificial sugars, NO fiber, and only some thoroughly cooked vegetables!

My RLS has been out of control for about a month. The muscles in my whole body tense up and “fire” plus they ache. Once it starts it has to be the most maddening feeling in the world! My RLS is worse on a full moon cycle (lunacy! LOL!. I can tell when it’s a full moon without looking up in the sky because of my RLS!

My family doctor was on vacation so I saw another doctor that I like and trust on Monday. He prescribed 10/100 of Carvidopa - Levodopa at bedtime and a 8 oz glass of tonic water (for the quinine in it). I also bought a bottle of 5 mg melatonin and 90 mg potassium OTC pills.

I think his goal was to get me into a sleep routine AND to get some relief from the RLS. I tried to drink the tonic water but it tastes AWFUL and I felt like hurling so that’s out for now. The Carvidopa - Levodopa seems to be helping as does the melatonin.

I also have to take morphine sulfate for my wrecked neck and back. I have been trying (with my doctor’s guidance) to wean myself off of the morphine. I was taking 30 mg of it twice a day. I was down to 20 mg twice a day until my RLS started acting up. In order to get a decent night’s sleep, I went back to the 30 mg dose of morphine at bed time and has really helped.

I also stopped taking dicyclomine (Bentyl) (that I was taking for the IBS) because I read that it can aggravate the RLS! Another contradiction!

My goal here is to learn what I can do to help minimize my RLS without disturbing any or all of my other “problems”. I’m open to suggestions but I do have to be careful not to upset my other conditions so be patient with me.

[Polar Bear]

Hello and welcome to the Discussion Board.
We are sorry that you need us, but glad that you found us.

It is indeed quite a problem when having two conditions that need conflicting methods of treatment. For instance, often when dealing with rls, it can be a case of dealing with one condition and then if that treatment increases the rls/wed symptoms, adjust the wed medication to deal with that increase. None of us want to be increasing our medications unnecessarily but sometimes we have to do what it takes.

How often do you suffer from wed symptoms, would it be on a daily basis.
The reason I ask is that you are now taking levadopa at bedtime. Are you taking this every night.
It is understood that levadopa which does work well, should not be taken on a regular basis because it has a very very high possibility of causing augmentation, something like 75%. levadopa (also known as sinimet) should only be taken approximately 3 or 4 times per week. What other medications have you used over the years to control wed.

Also, and I stand to be corrected, but my understanding is that tonic water/quinine will make absolutely no difference to wed although it may help with cramps.

I have no personal experience of taking morphine but would wonder does the morphine not give you good relief for wed. Opiates are generally the silver bullet for wed if you can find a doctor who is willing to prescribe. But you would normally have to first try the other meds such as Requip, Mirapex, Lyrica etc. etc.

Sleep is a big problem for me and my doctor prescribed Melatonin for 13 weeks which is reckoned to be the maximum time required to develop a sleep routine but it didn't work for me. I am you have more success.

[rthom]

hi folks.
I take hydromorph and it helps quiet things a bit--this i take before bed so i can fall asleep easier. Good luck!!

[Baffledsilly]

Hello Deuce.
Sorry to hear you are having such a hard time with multiple diseases, I can't even begin to imagine it. Lets hope somehow you find a method that works for you. Sinimet is working for me too for now, but after reading Polar Bear's post I am going to return to my Neurologist and ask him why he kept telling me to take one 3 times a day... Lack of interest, inability to keep updated, not sure why this happens? That's why we all have to find our own way of doing this, with advise from people who know what your going through. Not people who want million dollar paychecks, running us through their office like a Ford assembly line and refusing to listen to us.

Take care

[Polar Bear]

If you go to the link in my signature it will provide good basic information with regard to medications.

[ViewsAskew]

DeuceNova, it occurred to me that your RLS/WED symptoms may be increasing because you're decreasing your opioid intake. Opioids are very successful in treating WED, so decreasing them would allow the symptoms to break through. If opioids help your other conditions, then you could potentially successfully resolve both by using them.

As already mentioned carbidopa-levadopa are not considered great for everyday use or in high quantities. The medical literature shows that over 70% of people who take it for WED daily are likely to get a condition called augmentation. This is when the WED symptoms become stronger or occur more than they did. For me, it meant both stronger and earlier. Not a fun condition.

[badnights]

Hi Deuce, the others have said most of what I would have said, but I will add that it may be useful to check your ferritin levels. Ferritin is not normally measured in blood iron workups but its levels correlate with WED severity and also low levels are associated with augmentation on the dopamine drugs. So not only should you not take Sinement, because you have daily WED, but also, if your ferritin is low you should not take the approved dopamine agonists either ! (ropinirole/Requip or pramipexole/Mirapex, which your doctor would have recommended if s/he was up-to-date) People with WED should have ferritin over 50, preferably 100-200, before taking dopamine drugs.

[DeuceNova]

I had to look up what WED is and found that it stands for Willis-Ekbom disease.

I think that my doctor is having me take the carbidopa-levadopa every night to get into a sleep routine. I was NOT getting asleep befor 1 AM to 4 AM because of the RLS for quite some time (which he knows). I'm going to assume that once I get into a routine that most likely I won't be taking the carbidopa-levadopa every night but on an "as needed" basis (EX: on full moon nights when I need help getting a good night's sleep).

check your ferritin levels

I will ask my regular doctor about that as she is in charge of my pain management and my diabetes management. She is VERY attuned to the patient's needs and ideas.

[badnights]

That's a good idea. How about taking her a printed copy of the document in Polar Bear's signature? Lots of us have done that, and our doctors generally reacted well. Ask politely if she would like some information that you found, written by RLS specialists.
(It's by some of the same doctors who wrote a similar paper for the Mayo Clinic, but the Mayo paper is a little outdated now.)

[DeuceNova]

I have had some REALLY bad nights with my RLS since I last posted.

My legs HURT so much that there is no way that I'm able to get a good night's sleep. IF and when I do get to sleep, it only lasts an hour or two and I wake up (like right now) with my legs hurting.

I decided to look at the side effects of all of my medications. The one medication that stood out is citalopram Hbr 20 mg that I take once a day. I've been taking it at supper time. About an hour to two hours after I take my meds at supper time is when my RLS starts.

Here is what I found out about citalopram and I highlighted what side effects I have had:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); absent menstrual period; bizarre behavior; black or bloody stools; chest pain; confusion; decreased concentration; decreased coordination; fainting; fast, slow, or irregular heartbeat; hallucinations; memory loss; new or worsening agitation, panic attacks, aggressiveness, impulsiveness, irritability, hostility, exaggerated feeling of well-being, restlessness or inability to sit still, persistent, painful erection; red, swollen, blistered, or peeling skin; seizures; severe or persistent anxiety or trouble sleeping; severe or persistent headache; shortness of breath; stomach pain; suicidal thoughts or attempts; tremor; unusual bruising or bleeding; unusual or severe mental or mood changes; unusual weakness; vision changes; worsening of depression.

Do any of you take or have taken citalopram and experienced any of these side effects?

I have an appointment with my family physician on the 16th in regards to my RLS at which we are going to try to nail down why my RLS is acting up so bad.

[Polar Bear]

Yes, I have been taking citalopram for about 2 years. As I also have fibromyalgia my GP considered it important that I was taking an antidepressant and for a very long time I fought against this as I didn't consider that my mood merited an AD. However, eventually I gave in and started it at 10mg and then upped to 20mg. What a difference - in a good way. I began to be excited about an up and coming holiday whereas before I hadn't cared at all about it. My mood had been low, but not severely severely low, And life took on a wee sparkle again.

My reason for refusing to take the citalopram was that it was considered to be a poor choice for those of us with RLS/WED.
My doc agreed that we would quickly reasses my WED meds if the citalopram caused any problems and I am happy to say that it appears there have been no ill effects.

Point to note - I take the citalopram in the morning time.

[DeuceNova]

I WAS taking it at supper time till today when my wife suggested that I change it to at breakfast. My legs have been KILLING me all day. I have been up and around more today as it is a very balmy 50 to 60 F out which should help releive the RLS symptoms.

I have my fingers crossed that my RLS will be better tonight.

Here's hoping!

[rthom]

Fingers crossed here!

[badnights]

I am thinking you might be one of the people who get worsened WED from citalopram. SSRIs and tri-cyclics are thought to exacerbate WED in many people. (the link in Polar Bear's signature has a paragraph on p4 on medications that make WED worse. ) If that's true for you, it doesns't mean you can't use an AD- it just means that either
1. you have to try a different one, and hope it doesn't affect your WED, or
2. you have to increase the dose or change the type of your WED medication, to cover off the worsened symptoms.

It might be hard to tell definitively if it really is the citalopram.

Really tho, the opioid you were taking has almost certainly been treating the WED, as Ann said. Opioids work as well as levo-carbidopa to relieve the symptoms. They have the problem of being addictive (though it's unlikely you'll get addicted if you follow your prescription), and the added benefit of never causing augmentation.

Augmentation is a worsening of the symptoms. It usually takes a while but has been known to happen within days of starting a dopamine drug. Levo-carbidopa is the worst for that. Having a serum ferritin level of at least 100 might help prevent augmentation.

In my opinion, the best medication for you that won't interfere with your other conditions and medications is the morphine you're trying to reduce. Or a different opioid. You kill two birds with one stone: back pain and WED. But perhaps a lower dose of the opioid in combination with one of the newer dopamine drugs would work. Can you show your doctor the part of the document that talks about augmentation (p. 6 and 7)? Then ask if he thinks you should switch off the levo-carbidopa onto one of the newer dopamine drugs, in order to avoid that? (because it's hell).

[DeuceNova]

badnights:

Thank you for the reply.

I switched from taking the citalopram 20 mg at supper time to at breakfast time. I'm sleeping better at night BUT now the symptoms are during the day.

Those symptoms are: drowsy, leg cramps, insomnia but not necessarily at once or in that order.

I have a doctor’s appointment on the 16th and am definitely bringing up all of the points made here. I suspect that I’m back on 30 mg of morphine sulfate twice a day and off the citalopram. I have to say that I have a great family doctor who not only knows what she is doing but listens to her patients.