Psychiatric effects

[momworries]

I am new to this board and am facing some difficult times with my son. He is a tormented sufferer of RLS (his father has it as well) along with anxiety. He hasn't slept well in years and is also on CPAP for obstructive sleep apnea. He is tall and thin and doesn't fit the typical OSA patient. He has also suffered with ADHD since early childhood and meds for one seem to aggravate the other. It is so complex and he is moody and exhausted. He told me that he would rather drink liquor and end up in a ditch than to face another tormented night. He is afraid to go to bed because he knows that a bad night of RLS transforms into that same feeling the next day. He is a hard worker and is driven to make something of himself (19 year old student) but I see the spiraling in his mood and frustration. He has begun to try alcohol, tobacco, and now pain medicine and we are going to get help. Has anyone else run into any of the issues and had complicated clinical scenarios. It is really sad.... Also would be interested to know if any RLS sufferers have also had siblings with epilepsy. My other two boys have generalized epilepsy and we have been so busy with them that we didn't address this as soon as we should have. The RLS sufferer has always taken care of his brothers and that adds to the anxiety.

[ViewsAskew]

It sounds as if there are many things happening in your home and with your family. You must be exhausted.

A family member has RLS/WED, is bipolar, and has issues with drugs and alcohol (self-medication). It created a very complex system of behavioral, physical, and medication issues. It's been a tough road for everyone involved. It is better. The parent involved found out after things were quite bad - the child hid it quite well. It is better now, but still takes a lot of work. The young patient was 17 when everything started going crazy and is now 20.

I wish I had some advice. The hardest thing, as someone who listens to my family talk about it, seems to be finding doctors who understand more than their part in the whole and who can work with other doctors. What general area of the world do you live in? You don't need to tell me the actual city - just a general area.

I do not know of any link between epilepsy and WED.

[Rustsmith]

I recognize a bit over half of your description of your son in myself. I am a 62yr old retiree now, so if he can get through this next few years, which may be rough without help, then he should be able to do well.

Is he currently being treated with anything for the WED? If not, then getting on a dopamine agonist (DA) such as pramipexole has the potential for really changing his life. The doctor should also run a ferritin check on his blood. Ferritin is an iron protein that indicates the iron stores in the brain. It is not part of a normal blood analysis, the doctor has to request it specifically. If the value is below 100, then taking an iron supplement such as iron sulfate along with some vitamin C should help raise it. For some WED patients, simply raising the ferritin level helps to resolve the WED. However, due to his age and the fact that his father also has it, increasing his ferritin may only help reduce the eventual risk of augmentation on a DA.

As for a link to epilepsy, I have not seen anything about a link. There was initially some though that the periodic leg movements at night called PLMs were a variant of epilepsy, but that thinking turned out to be incorrect. But, some of the medications used to treat epilepsy, such as gabapentin and zonisamine, have been shown to be effective forms of treatment for WED.

Finally, take a look at the information both here and on the Foundation's website about anti-depressants. Most of the medications used to treat this will make WED worse. There are approaches that a good doctor can take that are compatible with both or at least balance the issues between depression and WED. Of course the catch is that the doctor needs to be familiar with both diseases and the proper compatible treatments for each.

[Polar Bear]

This excellent book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
It deals with all aspects of the disease from diagnosis to treatment to augmentation.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

My own copy of this book is full of pencil notes and post-its, ready to back up a question/answer when necessary, especially during a medical appointment.

I hope your son seeks immediate treatment, it is possible that his symptoms could be under control.

[momworries]

God bless each of you for these comments. Does anyone have any information on theft as an adverse event with RLS drugs? He took some things from me and sold them and when we talk about it, he tells me that it is such an impulsive behavior that he doesn't even think through the consequences. He just wants a way to buy anything that can help him relax and sleep....and that is why we are in big trouble. He is a hard working student....getting and jumping into work all day (hard physical labor) because he says that it helps him calm down. Problem is that nighttime always comes and he told me that he is becoming afraid of going to bed.

[Rustsmith]

I haven't seen theft listed as a issue, but if he is taking a dopamine agonist, one of the side effects of this class of drugs is impulse control. Normally, the things listed for this side effect are things like gambling, compulsive shopping, overeating and hypersexuality. However, the side effect is one of impulse control, so when this side effect occurs, it will appear differently from individual to individual.

Therefore, is he taking pramipexole (Mirapex), ropinirole (Requip) or rotigotine (Neupro)?

[momworries]

He is taking Mirapex. I think that the article that I read on theft was with roopinirole but I am going to do some more research. Please don't hesitate to continue giving any information that you think would help me. Thank you so much!

[Rustsmith]

The compulsion side effect is one that is common to all of the DAs. So if he is taking Mirpex, the information that you found on Requip would be applicable to Mirpex as well.

When the compulsion side effect occurs, it is an indication that the doctor should change him to a non-DA form of treatment. Given his current psychiatric issues, the doctor may have some hard choices. Gabapentin and Lyrica have the potential for thoughts of suicide. The opiates could be viewed as a potential problem for someone with his current state of mind.

[Polar Bear]

momworries - I am sorry that your son is having such difficulty with symptoms. Clearly the present medication is not working. His GP (if that is who prescribed the medication) needs to be aware that this medication isn't working so that he can try other treatment. If the doctor is not well versed in the treatment of WED/RLS you may well need to provide some guidance and hope that he is accepting of this.
In the absence of the above mentioned book, I'd suggest you go to the Foundation site and look at their publications and print off the one on the treatment of WED/RLS.
My understanding is that if anti depressant medication is needed, that the patient should be taking this required medication, and the WED/RLS medication should be adjusted accordingly.

viewtopic.php?f=2&t=1068
This is a link to a thread on this site which provides many links to useful information which you could be printing off and using for discussion regarding treatment.
Once of the most important factors is that yourself and your son get yourselves informed as much as possible regarding this disease and treatment so that you can have a meaningful appointment and discussion with doctor regarding treatment i.e. not just take what doctor says and being fact - unless he is an 'expert'.

[badnights]

Hi momworries
Your son definitely needs to get off the pramipexole/Mirapex and he may possibly need to avoid ropinirole/Requip as well. (I don't know if experiencing impulse control disorder on one dopamine agonist makes one more likely to experience it on all drugs of that class - I would have to do some research to find out.) Please, go the doctor with him if he agrees, or coach him carefully to tell the doctor exactly what is happening. Some doctors don't consider Impulse Control Disorder to be serious, but I know someone whose family was ruined by it (gambling) and on this board you will find ample evidence, as if you need it, that ICD can destroy lives. So DON'T let the doctor talk you/him into continuing on Mirapex. It is simply not acceptable for your son, who is suffering so much, to have to suffer that agony too. Nor is it necessary.

Something immediate that is required is to get your son's ferritin levels measured, as rustsmith describes below. This is critical because for many people, low ferritin causes worse WED symptoms. It is also critical if your son will continue on a different dopamine agonist, because low ferritin increases the risk of augmentation. If his ferritin is under 100 (ask for the number, don't accept "normal" as the answer because many labs call 20 normal) then he should take oral iron supplements and may need to continue taking them indefinitely. On the bright side - - I love how they help me, so I don't mind having to take them. If I stop, the WED gets unbearable.

Is it possible that your son is augmenting? That is when the medication, which helped at first, begins to make the disease worse. Usually the worsening takes the form of earlier time of daily onset, spread to other body parts (eg. arms), increase in intensity, and/or shortened interval between sitting or lying down and onset of symptoms. If his symptoms are more than a little worse than when he started Mirapex, he could be augmenting, which is another very very good reason to stop the Mirapex.

Please let him know that stopping Mirapex is not easy, but is essential. If he can expect nothing of himself for a couple of weeks, he can get through it. What happens during Mirapex withdrawal, for a lot of people but hopefully not him!, is a dramatic worsening of WED symptoms for the first few days, then a gradual improvement until finally he is at the level he was at before starting Mirapex, or close to it. For people who don't know that the torture will end, quitting Mirapex can seem impossible. But it will end! The first 3 days are the worst. Note that most doctors are not aware of this issue. It is well-described in the literature (see the links in my signature; you may want to print some of them out to show your doctor if he doesn't seem to understand).

If it is still OK to take dopamine drugs after experiencing ICD on one (I don't know, maybe Ann does?), then he might want to try the Neupro/rotigotine patch.

The other classes of drugs that are known to be effective for WED are anti-convulsants and opioids. Either one is worth a try. The anti-convulsants might be very effective because they tend to enhance sleep, but they don't have a great track record for controlling the abnormal WED sensations and urge to move. Even though they are associated with a small risk of depression or mood swings and even suicidal ideation for some people, that is not a reason not to try them, since a lot of your son's depression may not be clinical depression but might simply be the result of chronic overwhelming sleep loss.

The opioids are very effective but some people suffer side effects. The good news is that there is such a wide variety to try, there is usually one that has no side effects. The bad news is that none are FDA-approved for WED, so most doctors don't know anything about how effective they are for WED. Your son may have to present some printed material to his doctor (eg. the WED Foundation booklet WED/RLS Medical Bulletin: A Publication for Healthcare Providers, which is aimed at healthcare providers and written by physicians. (This document is also very useful for patients who want to understand the disease - hopefully your son will want to read it!)

The trick is for him to explain to his doctor in CONCISE terms exactly what is happening to him. eg. "I sleep a total of 2-3 hours per night, I wake up 3 to 12 times per night, I do not feel refreshed in the morning, I feel as if I am dreaming or dozing all night. I am afraid to go to bed because I am being tortured.
I feel compelled to steal things, and I think it's the Mirapex that's making me this way because I never felt like this before I started taking it. I've heard about Impulse Control Disorder, do you think I could have that?
Do you think I could be experiencing augmentation? I have learned what it is -would you like this description of it? (hand him paper) - this is what's happening: my symptoms begin at noon whereas they used to begin at 6 or 7 pm etc etc
I'm so desperate for sleep that I've started to seek ways of getting sleep that are bad for my health and bad for my pocketbook
I am wildly depressed because I NEED SLEEP."

I have so much I want to tell him - and you - I advise you to let him read this entire thread, and cruise the board if he wants. It would help so much for him to realize that he's a perfectly normal person suffering from an absolutely ghastly disease (WED) and a largely unknown and poorly understood disease (UARS) (more on that later)

One of the things I want you and he to know is that once the WED is under control, a lot of the depression will probably dissipate. The breathing problem may improve as well, because when one thing goes wrong, everything else cranks up in intensity, whereas if you fix one thing, everything else improves too. One time, my GP sent me to a psychiatrist because she thought I was depressed. I was suffering from inadequately treated WED and not getting enough sleep, and yes, I was depressed - but I didn't need meds for it. The psychiatrist - wiser than my GP - told me that lack of sleep can cause symptoms just like those of every major psychiatric disorder. There is no way to diagnose a psychiatric disorder in a person suffering from chronic sleep loss, because the symptoms of the sleep loss can mimic any psychiatric disorder. Step one is to get some sleep! This, his doctor has to know and understand, so tell him to be very clear when he talks to the doctor. Write it out beforehand! It sounds goofy, but everything changes when you're sitting there with a doctor who's acting impatient and doesn't let you finish your sentences.

Regarding your son's breathing issues, was he diagnosed with Upper Airway Resistance Syndrome? Steve aka rustsmith and I have also been diagnosed with that, and tried CPAP but it did not seem to make any difference. I gave up on the CPAP after 3 months. We both are thin too (not that I've met Steve, but he has posted about it) so not the typical body types for OSA, just like your son. My case seems to be mild, and I feel - without any evidence - that it is related to an "asthma" I developed at the same time, which affects me only when I play hockey - i.e. I have to be exerting myself in cold air. I I would like to provide good advice on your son's UARS/OSA but I am not sure what can be done about that (though I wonder if corticosterooid asthma inhalers, like I take during hockey season, would help). (Probably not). Anyway, ask Steve aka rustsmith about UARS, he is very knowledgeable about it, or search for his posts on it.

Finally, back to your very first post in this Topic : YES I have a brother who had childhood epilepsy. He took some kind of medication for a short time (a few years maybe?) then stopped and was OK. He was so young he doesn't remember this; we got this info from our mother.

I'd like your son to know that even though he's got a large and complicated burden to deal with, it is manageable. there are things to try that he hasn't tried yet. There are reasons for the crazy stuff - the stealing, the attempts to self medicate, the extreme risk taking born of a desperate physical need to sleep. I think he needs to address the WED first, in order to remove that barrier to sleep, and to do that he needs to
1. get a doctor on board, someone he can work with,
2. get his ferritin measured and get off the Mirapex (cold turkey is best, with opioid to cover off the two weeks of withdrawal)
3. get on something else to replace the Mirapex (anti-convulsant, opioid, Neupro, or a combination of two of them).

Please see if your son wants to read this thread, I think he'd get a lot out of it. It's part of the process - the more you know about your disease, the more you can control it.

[Rustsmith]

Thanks Beth for reminding me that I forgot to cover the issue of UARS.

UARS is a controversial topic within the sleep medicine community. Some doctors think that it is a mild form of sleep apnea. Others feel that it is completely separate condition. Either way, most sleep labs are not set up to test for it correctly nor to do a proper titration study to find out what pressure to set a CPAP machine to. I was fortunate to have gotten a doctor who was trained at Stanford by the doctor who "discovered" UARS. You should also keep in mind that most insurance companies will not cover CPAP machines for UARS because the treatment is unproven, so sometimes UARS is "diagnosed" as mild sleep apnea so that the patient can receive insurance coverage for the machine.

I could give you a more complete discussion of UARS, but for more information on UARS it would proabably be best read through the internet websites for Dr. Steven Parks and Dr. Barry Krakow. I found Dr Park's website to present a number of undocumented opinions with frequent statements about how other doctors are wrong, but it was also quite informative. Dr Krakow takes a lower key approach but also presents views that are not widely supported within the medical community, but has lots of very favorable comments from patients who "failed" all other forms of treatment for UARS. You can find Dr Parks at http://doctorstevenpark.com/ and Dr Krakow at http://sleeptreatment.com/

Additionally, you might want to search for writings by Dr.Christian Guilleminault at Stanford. I don't know if you would feel comfortable reading some of his much more technical literature, but if you do, you can find a number of his UARS publications using Google Scholar.

Although Beth falls into the group whose UARS was not helped by CPAP, I have benefited. However, it has taken about a year of using the machine before I have seen a change in how well I sleep when my WED is under control.

Finally, I should mention that my WED physician is one of the medical advisers to the WED Foundation. When I last saw him, the advice that I was given most forcefully was the need to always use my CPAP machine. The discussion about my medications, diet, etc were all the type of discussion that you normally get from a doctor. But when he got to the CPAP machine, it was sort of "YOU WILL USE THE MACHINE, RIGHT?" Yes Sir!

[ViewsAskew]

Lots of info in this thread - I am constantly amazed at how much our members know.

It's my understanding that when ICD exists, the first thing to try is reduction of dose by 50% and possibly add some levadopa. If that doesn't work, then they talk about discontinuing completely (of any DA). But, most of the research related to this is for Parkinson patients. I'd definitely think about reducing - just to see what happens.

I know momworries wants to help - I'd want to do the same. I think Beth said something exceptionally important - momworries, do whatever you can to get your son to come here. It's great that you want to guide him and support him; I think he's likely to feel better about all of this if he participates here. There is something specific that happens when you feel as if you belong to this community. When you come here and see that other people have the same struggles, there is an emotional release in one way and an emotional connection in another that isn't the same if you just hear about it.

[Polar Bear]

momworries -

Yes, Yes, what everyone else has said.

Please please encourage your son to get on here and read for himself. And if you are both gleaning information then you can both discuss the issues and be well informed when attending doc appointments.
We really do have an almost family feel here and do our best so that folks don't feel alone.

[badnights]

re rustsmith's post: Hmmm, I only used mine for 3 months.

@ momworries: what is his current dose of pramipexole? and are there any other medications he takes? It's not strictly related to dose, but he's more likely to be augmenting on higher doses. The NEW maximum recommended daily dose of pramipxole/Mirapex is a mere 0.25 mg.

Both of these drugs should be started at their lowest dose
(ropinirole at 0.25 mg and pramipexole at 0.125 mg) and
increased if necessary every 5 to 7 days by their initial dose
until symptoms are controlled. Although the FDAapproved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively; many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, in the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole). However, augmentation may occur even at the
lowest doses of dopamine agonists.

New maximum doses:
0.25 mg pramipexole
1.0 mg ropinirole

re views' post on recommendations for dealing with ICD: Parkinson's patients take much higher doses of these meds than WED patients do, and much much higher than WED patients should. Doctors used to think that people didn't even get ICD on WED doses, but they have since been proven wrong. So - if people are getting ICD at low WED doses, how likely is it that halving the dose will help? and still help their WED? No science here, but I think not much. (If I was taking a drug that made me lose control of my behavior I would run like heck and never look back, no matter what the WED decided to do to me. Luckily I know there are other choices out there, so it's easy for me to say that.)

but all of that is irrelevant if he is augmenting. In that case, there is very little choice but to get completely off the Mirapex. Some doctors claim success in treating augmentation - for a while - by spreading the dose out more, but I think that may only work in early augmentation.

[chuas2]

Hi momworries-
The people on these discussion boards are incredibly knowledgeable. I'm a newcomer here, but I can't express how rewarding it's been...to know that other people have what you have, understand what you're going through, comprehend the severity of which WED can affect your life - physically and psychologically.

Please have your son read people's replies, suggestions, links, etc. here. I think he would be enormously comforted. I have been!
Best of luck to you both,
Kris