My "final" mixture and some news from experts I met

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

My "final" mixture and some news from experts I met

Post by QyX »

Okay. It has been a long way but now it really looks like things have changed to the positive!

Now I take

Hydromorphone 8 - 0 - 8
Escitalopram 0 - 0 - 10 (it makes me sleepy but doesn't allow me to sleep, taking it in the evening is more like neutral, when I take in in the morning it makes me very tired)
Clonazepam 0 - 0 - 0 - 1 (30 minutes before bedtime)


The "trick" was the SSRi. It improved my mood and anxiety and pushed me to find a solution. I started taking Clonazepam again which my Neurologist recommended two times but I always stopped because it made me depressed, I wasn't able to focus because I was just a mess.

Now with the SSRi it all changed and I am finally able to cope Clonazepam and now other Benzodiazepines work much better which I can take as an add on when I have problems falling asleep but Clonazepam itself does a pretty good job here.

This week I went from Berlin to Munich to see another RLS specialist. She highly recommended the mixture of an SSRi + Clonazepam. She said many people with RLS suffer from Depression, anxiety and panic attacks and this worsens RLS. Also the rates of family members with anxiety, depression and panic attacks in RLS families are much higher and this can trigger an RLS before there wasn't any at all.

She also was very positive about iron infusion and recommended blood levels of 50 ng/ml of Ferritin minimum. Below that you should substitute.

Interesting in my case is: other Benzos like Lorazepam (except Diazepam and Alprazolam) don't have any effect until I have some Clonazepam in the system. Seems like there is something terribly wrong here with me and the total GABA-System is just a complete mess and all Clonazepam does is bringing it back to a normal state.

Now the mystery is solved why 12 other Benzodiazepines never worked and simply did nothing to me.

Taking the SSRi really improved life quality. My sleep, my daytime activities and energy is now improving every day.

Hopefully somebody can benefit from my experience.

Benzodiazepine long-term therapy might be a good thing when you have RLS. The rules really seem to be a bit different for us.

I was so scared about addiction, tolerance and loosing mental abilities but both Doctors said that this is my chance to finish Medical School so I decided to go with Clonazepam.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My "final" mixture and some news from experts I met

Post by QyX »

Oh, now I sleep between 6 - 9 hours. And I have energy, I can get things done and I am motivated.

There is also some fatigue over the day. Things are not perfect yet but we are working on that. Clonazepam is just back in the system for a week and Escitalopram for 3 weeks.

EeFall
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Location: Washington State, USA

Re: My "final" mixture and some news from experts I met

Post by EeFall »

QyX wrote:Oh, now I sleep between 6 - 9 hours. And I have energy, I can get things done and I am motivated.

There is also some fatigue over the day. Things are not perfect yet but we are working on that. Clonazepam is just back in the system for a week and Escitalopram for 3 weeks.


Fantastic. I hope it works for you for years to come and you get through Medical School.

Polar Bear
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Location: N. Ireland

Re: My "final" mixture and some news from experts I met

Post by Polar Bear »

I am taking Citalopram 20mg daily ... I fought taking this because I felt I didn't need it. So, there's me, in with the doc in floods of tears and saying 'there's nothing up with me apart from WED/RLS'.
Within 3 - 4 weeks the medication was helping and has continued to do so.
I am very happy that it has worked for you and you are now feeling so well.
Congratulations
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: My "final" mixture and some news from experts I met

Post by ViewsAskew »

May this combo provide many years of relief.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: My "final" mixture and some news from experts I met

Post by badnights »

This is very happy news! Things may never be 100%, but what you've got is much better than what you've had lately.

I hope everyone who reads this knows your story, and how hopeless you thought it all was after 14 years of mis-diagnoses and the past year (? or whatever it was) of trying to find a combination of meds that allowed you to function. Brutal hell, but when it seemed that nothing would help, you persevered, you found doctors, and you ended up finding something that helped.

I know it will work well for a long time now, and will just need the occasional tweak. :D :D
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: My "final" mixture and some news from experts I met

Post by debbluebird »

Congratulations on your find. This is very good news. I wish you success in medical school. I hope you keep in contact with us as your schedule allows. You will be busy in school. :D

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My "final" mixture and some news from experts I met

Post by QyX »

Here I am again. Back with bad news.

Since I am taking the SSRi the Clonazepam doesn't make me fall asleep anymore. But I need the SSRi. Without a SSRi I can't take Benzos longer then a couple of days and I get very anxious and depressed in general.

The last days I tried something crazy. I started taking Quetiapine (Seroquel) again. Well, I didn't work out. I was able to sleep but before that my feets were burning for hours.

The only Benzo who was able to make me sleep 100% is Diazepam and it looks like it is one of the metabolites of Diazepam in particular (Oxazepam) who is doing that.

So I am maybe just replacing Clonazepam with Oxazepam.

I have to say I am very very tired from trying. I am sick of Benzos, Opioids and not working medication.

On the 24th of August I am going to see the sleep experts here at the University. They are maybe the best of the best in Germany and my case is really really complicated and long because I have severe primary RLS with a complicated ans severe mood disorder together.

And I respond to many drugs paradox, I have to many side effects or the drug does not have any effect at all. This complicates everything.

My Doctor reached a point where he is basicly giving me everything I want because it just doesn't matter any more. It is only trial & error now.

The situation is such a mess. Now I am taking Stimulants again to at leasts have some kind of daytime activity.

I simply need a break from all this drugs and disorders. I would love to throw all my drugs out of the window or sell them on the black market.

All my Hydromorphone, Oxycodone, Benzos and other Opioids.

They all can go to hell!

ViewsAskew
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Re: My "final" mixture and some news from experts I met

Post by ViewsAskew »

I hear you. You've really had a difficult time with this. I know I haven't resolved the sleep component yet - have been trying for several years.

I hope the new glutamate research holds hope for helping us fall asleep. I don't know if it will resolve everything (unlikely), but it may hold a key for why we are wide awake at midnight! It sounds trite, I imagine, but hang in there - other than giving up, it's our only option.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: My "final" mixture and some news from experts I met

Post by Polar Bear »

I am so sorry to hear that just when it seemed all was fabulous - that you find you cannot sleep.

This is me also - and indeed a big % of our membership
It is no consolation but I tell myself that I used to be awake with horrible symptoms - now I am awake , but no horrible symptoms (mostly).
I will take the latter.

I feel for you that you are chasing sleep... as well as trying to study... A lot of us find that seeking sleep is like searching for the Holy Grail.
On 24 August you have an appointment with the sleep experts and I wish you well. It might be an idea to look at some of the Foundation leaflets, I think they have one on sleep, and print it off for information at your appointment.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
Posts: 2179
Joined: Mon May 21, 2012 3:27 pm

Re: My "final" mixture and some news from experts I met

Post by debbluebird »

I'm so sorry to hear you are having a bad time. I hope it starts to get better soon.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My "final" mixture and some news from experts I met

Post by QyX »

Here are some interesting news: I made it possible that my body accepts Pramipexol now! How did I do that?

Well it happened by accident. Because of my anxiety and depression my Doctor put me on Cipralex (Escitalopram) and somehow with this SSRi in the system my body accepts now Pramipexol.

I had some rough weeks, including some hyper weeks with less then 4 hours per sleep per night and lots of energy over the day. Seems like I still have some bipolar genes which makes everything so complicated in mx treatment.

This week I had an appointment at an big Neurocentre here in Berlin but they didn't accept me as a patient because my case is too complicated to them.

They were pissed off that I am already taking strong opioids at the age of 28 and didn't understand the concept of augmentation at all.

So now my medication is the following:

Hydromorphon: 8 - 0 - 8 (as always)
Escitalopram 5 - 0 - 0 (reduced from 10 to 5 because I was so hyperactive)

I also was taking some days Haloperidol because I was so manic. It caused internal restlessness but no RLS-Symptoms. Very weird and my dose was high up 10 to mg for 3 days!

In the end it looked like the Clonazepam was bringing me down to earth.

So I am now taking

Clonazepam: 0 - 0 - 4
Pramipexol: 0 - 0 - 0,18 - 0,35

I am also backin to the stimulants (Methylphenidat/Ritalin) and going to sports regularly.

We are now trying small doses of Abilify (Aripriprazol).

It has a unique mechanis at the D2-Receptors and might be tolerable with RLS and Pramipexol and low dose and help stabalize my affective situation.


The Doctor at the big Neurocentre was saying "Nuts!" to letter my Doctor wrote about my situation and laughing about the medication and I was at the centre where they say the specialzed in RLS.

Too many still thing that giving Opioids to RLS patients, especially young patients is a mistake but I am pretty sure that the opioids are the most important class of drug we have for severe cases of RLS.

Pretty hard to find a Doctor for me here in Berlin.

Get rejected all the time and they get pissed about my autism diagnose and the opioids. Like it is my fault.

My medication has been approved by several real experts but they don't care.

Opioids = poison.

Grrrrr

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My "final" mixture and some news from experts I met

Post by QyX »

Okay. Now it is like this.

Over the day I am 100% symptoms free.

At night I am around 90% symptoms free.

At 8 pm I take 2 mg of Clonazepam and 0,18 mg of Pramipexole und before i go to bed I take another 1 mg of Clonazepam and 0,35 mg Pramipexole together with 100 mg Tilidin (a low potent opioid, not avaiable in the U.S.)

The Tilidin helps me avoiding taking higher doses of Hydromorphon at night and works perfetly at the peak hours.

Maybe this is really finally the mixture I have been working on so long.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My "final" mixture and some news from experts I met

Post by QyX »

So and I spoke to my Doctor again today and he said: "Now, you are so crystal clear, so awake, so fine. I am not gonna change anything anymore."

Let's just hope it stays like this!

Chipmunk
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Re: My "final" mixture and some news from experts I met

Post by Chipmunk »

Thanks for the updates! I can identify with your story so much - non-typical reactions to medications, the "here's a different RX" every time I went to see the doctor and I would just have to sort out if it worked or not. FWIW, I have a genetic disease called Ehlers-Danlos, which may have a lot to do with my weird reactions to meds, and I wonder if you might have an underlying disorder as well. Highly unlikely, I know, but just a thought.
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

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