Mid 20 with severe RLS from Germany

[QyX]

Hello!

I am mid 20 and just started studying Medicine in one of the greatest Medical Schools in Germany. I have been diagnosed with a severe RLS in August 2012 after I haven been treated for countless psychiatric disorder since 1998, including ADHD, bipolar disorder, Depression, anxiety disorders, social phobia. In all these years I took around 30 different psychiatric drugs, many of them in very high doses, especially mood stabalizers, stimulants, antipsychotics like Seroquel and Zyprexa and Benzodiazepines. It was a pure horror show. At some point my new and old doctor got suspicious and we started the withdraw of all drugs. It turned out that Lithium was killing me, causing extreme anxiety and severe sleeping disorders. After the withdraw my Psychiatrist who is also a Neurologist was able to make the proper diagnose: RLS.

It didn't take long and I was on Oxycodone. Now I am taking 90 mg of Oxycodone/24h and Pramipexol 0,52 mg XR and 0,18 mg short acting together with an antidepressant called Valdoxan (Agomeltain). With these combination I was finally able to sleep and get back to some kind of a normal self and start Med School.

My doctor told me that I am his only RLS-patient taking Oxycodone and from my point of view my dose is relatively high, considering my age. I don't know where this is going and it scares but I am still very optimistic to finish Med School one day. With this history and disorder it was big struggle to find my way into Med School.

I don't know any other RLS-patient with that kind of story, age and severity. Also the German RLS scene is very small and knowledge about the disorder is limited. The experiences I made until I finally had the right diagnose, all the mistreament, all the Psychiatrists throwing wrong diagnoses at me ... I don't know what to do with that ...

[ViewsAskew]

You went through a lot to get to this diagnosis. It is scary, to me, to think that you were given all those medications and none of it was what was wrong with you. I was inspired by the doctor who helped you get through this and figure it out. He or she is a very special doctor - many, in my experience, would not have done that.

You are going to be such a wonderful advocate for people with WED/RLS. It makes me very happy that you are going into medicine.

Per your diagnosis, I'd say that we don't have many people with severe WED at an early age, but we definitely have had several here. We have had a few parents in here with children who are under 5 who have severe problems; in ten to twenty years, I wonder if the children will be grown up and in here asking questions.

I use dolophine (methadone). I use 20 to 25 mg a day, starting about 4 hours after I get up. In fact, I'm late today and am sitting here winding my feet and legs under my chair. Not sure who uses oxycodone here or how much they use. I think the sustained release oxy can be used up to 80 mg a day, according to the chart in the Clinical Management of Restless Legs Syndrome. I am unsure if you can get this book, but as a promising medical professional, it is a book that I feel you should have. Authors are Hening, Buchfuhrer, and Lee.

Welcome to the board.

[QyX]

Thank you for your answer. As a Med Student I have access to the international scientific medical literature. Maybe I already read the book you were talking about. In general you can dose Oxycodone up to 400 mg per day. There is also a combination of Oxycodone with Nalaxon on the market. A 20 mg pill of XR Oxycodne includes 10 mg of Nalaxon, a 10 mg Oxycodone pill 5 mg of Nalaxon. The Nalaxon avoids opstipation. Here you can take only up 80 mg of these combination. The liver can only process around 40 mg of Nalaxon per 24 hours. If you would take more Nalaxon it would block the opiods from working in the brain and causing withdraw symptoms. So I take 80 mg of Oxycodone/Naloxone combination and 10 mg of regular Oxycodne XR.

You are right about my doctor. He is indeed very special and we developed some kind of friendship after all the dramatic stuff who has happened to me. He is a very smart men who also studied Philosophy, Political Science and German studies. He has the opinion that I have a lots of potential and would make a great physician. There have been phases where we spoke daily over the phone.

I came to him when I already had a lots of psychiatrid diagnoses and back then he no chance to figure out what was really wrong of me. I wasn't really talking much about me and believed in the previous psychiatric diagnose. There was some kind of logic behind it and the drugs I got back then were hiding but also worsening my RLS symptoms in a really horrible way. I moved a away for some years to finish school and after that my hole situation got worse and worse. At some point I started talking which lead to this horrible withdraw and the RLS diagnose.

What I really don't like is taking opioids daily at this young age. I am already somehow tired of taking them. I instantly notice when they wear off. Even only 30 minutes can make a big difference and only mild sensations in my legs can already wake me up. Before I was on Oxycodone I was thinking a lot of harming and cutting my legs because of all the pain and weird sensations. Every night I was fighting for sleep, moving around in the bed all the time for hours after I finally found some peache around 7 am. I did that so long and told nobody. I always thought these kind of symptoms have something to do with my psychiatric diagnoses.

For many years I was doing a lot of free work in various medical organisations dealing with psychiatric disorders and helping other people with psychiatric disorders as some kind of self-help approach. When it turned out that I never really had a psychiatric disorder, that this hole ADHD, depression, bipolar disorder thing was completely bullshit my hole world got killed. Everything changed and now there is really no doubt that I do have RLS. I can feel it every day and with treatment I am now in much better state then I ever was. Now I hope that I stay stable and can keep Pramipexol because opioids alone just don't do it.

[jakesmom]

Welcome QyX,

I am curious about your antidepressant. I need to be on one, but I don't want to take anything that makes WED worse. Does yours make your symptoms worse or does it not seem to impact them?

What a Godsend you are going to be to sufferers when you start practicing. If you decide to move to Arkansas, let me know and I will gladly be your first patient!!!!!

[ViewsAskew]

Welcome QyX,

I am curious about your antidepressant. I need to be on one, but I don't want to take anything that makes WED worse. Does yours make your symptoms worse or does it not seem to impact them?

What a Godsend you are going to be to sufferers when you start practicing. If you decide to move to Arkansas, let me know and I will gladly be your first patient!!!!!

All SSRIs (and some other types) can worsen WED for anyone....but you can't know which it will be or if any will affect any given person. Te last research that I saw showed that the risk isn't terribly high - about 2 to 10% of people have increased WED when they take an SSRI. SSRI's all increase the amount of serotonin in the brain. Not sure why that makes WED worse, but it may mean that dopamine is decreases or that the resulting brain chemistry combination somehow impacts WED.

Many experts suggest starting with a non-SSRI, such as buproprion (Wellburtrin in the US). It rarely causes WED to be worse, but occasionally does. It also may not impact the depression.

Many people find that their depressive symptoms stop when the WED is under control, but that doesn't always happen. If the WED is under control and an antidepressant is needed, you just have to try them until you find one that works.

[QyX]

Welcome QyX,

I am curious about your antidepressant. I need to be on one, but I don't want to take anything that makes WED worse. Does yours make your symptoms worse or does it not seem to impact them?

What a Godsend you are going to be to sufferers when you start practicing. If you decide to move to Arkansas, let me know and I will gladly be your first patient!!!!!

Hello jakesmom,

the antidepressant I take is not approved by the FDA in the U.S. The FDA considered the drug Agomeltain, sold under the brand name "Valdoxan" in Europe as useless for treatment of depressions. In general it is a week antidepressent but it has a unique rezeptor profile. It stimulates the Meltanon-M1 and M2-Receptors and "blocks" the Serotonin-5HT2C Receptor. Without Valdoxan I have severe trouble falling asleep. It normally doesn't work without it.

When you read across the literature about RLS you can read that SSRi are somehow problematic. A couple of months ago I read an article about RLS & Depression and the authors recommended Bupropion or Reboxetine. Both antidepressants don't directly stimulate the serotonin receptors.

I had Bupropion (Elontril, Zyban, Wellbutrin) before. It mainly stimulates the dopamin and the noradrenalin. Normally you take that drug in the morning because it is stimulating but it made me sleepy and sometimes I fall asleep. The sleep I got ouf of Bupropion was horrible so after a short time I stopped taking it. They also say that new antidepressants like Duloxetine (Cymbalta) would be safe with RLS but I am sceptic.

I would work as long as it make sense on improving the sleep quality and then see if you really need an antidepressant.

I had a couple of sedating antidepressants in the pasts. They were the pure horror and made everything worse. Very often I had a paradox response to sedating agents.

[Polar Bear]

For general information - Wellbrutin which is sold here in the UK as Zyban, is not licensed as an antidepressant. It is prescribed as an aid for smoking cessation.

I use Citalopram (antidepressant) and don't believe there has been any negative impact on my WED symptoms.

[jakesmom]

I am hopeful when I get the issue with my neck fixed I will be able to sleep again and the depression and insomnia will ease up. Thanks for the suggestions for meds that don't agitate your RLS.

[badnights]

QyX
What terrible things you've survived. I had hoped that kind of horror story was a thing of the past. I can't express what I feel. I'm glad you've joined us here.

It sounds like you would benefit from a continuous-release version of opioid? Perhaps oxycontin? I'm taking hydromorph contin (18 mg spread over the day, concentrated in evening) along with 0.25 pramipexole twice a week to help me sleep better (I can't take it all the time because it dulls my reflexes and makes me sleepy during the day), and levo-carbidopa for fast-acting relief when I really need it (can't take that too often either, because of augmentation).

I know it's hard not to worry about the future, but the best thing you can do is to accept that you're functional right now, and pursue your goals. The time may never come when you have to worry about increasing opioid doses. So leave it alone for now.

My greatest hope is that enough research will be done that an effective treatment will be found in the next few years, a treatment based on a real understanding of the causes of the disease. I have a small personal goal of trying to help make that happen, by donating, by helping out here, by trying to do a few other things that haven't really gotten off the ground yet. It's heartening to know you are studying medicine. Do you plan to go into clinical practice or research?