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

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doety
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Joined: Fri Sep 15, 2006 4:25 pm

Another take

Post by doety »

When I saw the title with "final" in it, I thought uh-oh. How many of us have thought that...how many times. I now believe this is a moving target, at least for now, and that we have to accept the slippery-ness of it. I've been discouraged recently when two people who care about me (but aren't around me nor do they know me well) have taken me aside to talk, convinced I'm a drug addict. "Please see a drug counselor," they say in low, soothing voices.

Well, one might think exactly that given the contents of my cabinet. But I wanted to cry. I wanted them to listen when I said: So far in the last two years, I've withdrawn -- by myself with no help from the medical profession thank you very much-- from Methadone, Suboxone, Mirapex and clonazepam. All those bottles sit in the cabinet and I don't have "urges" to take one f**king thing -- I just want one thing: (let's say it all together now) SLEEP. I have been brave and courageous -- and in fact you should come watch me go through weeks of withdrawal, crawling on the floor, not able to make sense -- and tell me again I'm an addict. My daughter also believes that. And I'm sick of it.

Tonight I talked to the doctor daughter of a good friend. She went to med school rather late in life. They're rich; she just wants to help. She recently saw a woman who was recovering from a knee replacement and docs had her on a huge amount of opiates. She is convinced that opiates cause pain. As she reduced the woman's drug, the woman felt better and better. I'm putting mine up someplace -- I thought Tramadol might work. It did once or twice, then I could feel it turn on me. Methadone did just what it did years ago -- I fall asleep talking, driving. Oxy makes everything worse. Now that I'm off Mirapex(something like 28 days), what to take is a big puzzle. One night I tried Valium and it worked pretty well. Maybe I'll try that. It's a nightly decision.

We talked about Glutamate...she said she thought the medical people had always known there's been a connection. (I do not know what to think of that). She thinks hormones may play a role. When I took them I had no problems. (She gets angry talking about the big hormone study that she says was crap and one of the biggest mistakes they ever made).

She also talked about the complexity of it all -- we surely know that. As I read this board and look at what we do, I always wish we had SOMETHING in common besides our misery.

I didn't come away hopeful, but I guess I felt validated. I send everyone thoughts for some time of peace tonight.

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

Post by badnights »

QyX wrote: 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.
Absolutely. I know it, you know it, half this board knows it. There is nothing else out there that works, and until people figure out what is causing these symptoms, opioids are the best thing we have. Life on a drug, or no life, is not even a choice. People should open their minds and listen.

doety: I wanted to cry as I read your post. How articulate you are, and how effectively you described what you wanted to say to them! The doctor you talked to seems kind and caring and OPEN Minded; it brings hope to know that not everyone is a dingbat.
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.

QyX
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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 »

Chipmunk wrote: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.


I do have a underlying disorder. I have a Autism Spectrum Disorder (****) in combination with some ADHD-Symptoms. I also do have a mild bipolar disorder where I do not reach the criteria for a diagnose but still the symptoms interfere together with by autism and my RLS enough that they need to be treated.

So right now I am taking:

Hydromorphon: 8 - 0 - 8 (basic RLS + pain)
Hydromoron 1,3 mg Instant Release as needed
Clonazepam: 0 - 0 - 2,5
Pramipexol: 0 - 0 - 0,82
Escitalopram: 5 - 0 - 0

Methylphenidat (Ritalin) as needed for my autism, ADHS-symptoms and daytime tiredness.

AND .... the antipsychotic Abilify (Aripriprazol)

We stopped the Tilidin because we added Methylphenidat which is a narcotic here and it is complicated to prescribe 3 different narcotic substances (Hydromorphon, Tilidin and Methylphenidat). So we just switched to fast acting Hydromorphone if I wake up because of pain or other RLS-Symptoms.

I don't think there is something real "final". It is dynamic.

Some words regarding the Abilify:

I did have a psychosis in 2004 and do have mild bipolar symptoms and sometimes the euphoria doesn't let me sleep. It is real complicated to take an antipsychotic when you have severe RLS like me. My big luck is that Abilify works. It has a special mechanism at the Dopamin Receptors and works as a partial agonist/antagonist.

There was this only drug. If this drug wouldn't have worked I would be in big trouble.

Now I am stable as I have never been before.

QyX
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Re: Another take

Post by QyX »

doety wrote:When I saw the title with "final" in it, ...


I said "final", not final. I see it all as a dynamic process. For example my Clonazepam dose is now going down by it self. I recognize that I sleep too long so I slowly lower the dose to avoid to much sedation and time spent in bed.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

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

Post by doety »

Wasn't putting anyone down -- I would never do that. I think we'd all like to have one pill or one regime we could follow to deal with this mess. My daughter's father has RLS, too, unfortunately, and she seems to be on the road to getting it. Makes me sick! Good luck to all.

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

Post by Chipmunk »

What do the numbers after your meds mean?
Hydromorphon: 8 - 0 - 8 (basic RLS + pain)
Hydromoron 1,3 mg Instant Release as needed
Clonazepam: 0 - 0 - 2,5
Pramipexol: 0 - 0 - 0,82
Escitalopram: 5 - 0 - 0
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.

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

Post by badnights »

I'm thinking it means morning, midday, and evening doses?
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.

QyX
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Location: Berlin / Germany

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

Post by QyX »

badnights wrote:I'm thinking it means morning, midday, and evening doses?


Yes. That's correct.

I am here with some "news". The "news" are that things are going well and that I am now sleeping fine for weeks now while my sleep is improving week by week.

My medication has only changed a bit. Right now I take

Hydromorphon : 8 - 0 - 8, so 16 mg total/day
Escitalopram: 10 mg in the morning
and 0,7 mg of Pramipexol around bed time.

We stopped Clonazepam on my request because I think long term daily use of Benzodiazepines isn't benefical in my case. So I switched to Diazepam and I am currently withdrawing at a rate of 2-3 mg per week. Right now my dose is 12 mg. I am optimistic that Pramipexol alone will cover my sleep and I can't wait until I am done taking Benzodiazepines daily.

The good thing is that I can always take them when I need them, like when there is some exta stress which is causing me trouble falling asleep.

For the moment things have never been so good.

I think it was/is the Pramipexol which improved my situation over the weeks. Before I was taking Escitalopram I was augmenting on Pramipexol after a couple of days but since I am taking Esciatlopram it balances out the side effects of the Pramipexol as Pramipexol balances out the side effects of Escitalopram. For me that is a very smart combination and I hope that this combination will work in the future as good as it does right now.

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

Post by rthom »

:D :thumbup: :clap:

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

Post by QyX »

rthom wrote::D :thumbup: :clap:


Thank You!

Right now it is really the first time that I am somehow statisfied with the situation.

When I think about the past two years and the horrible setback in May/June this year everything is so much better now.

It really took my body a while to adapt to the opioids but it was worth it. Hydromorphon is very effetice during the day and effective during the night. Pramipexol and a low dose of a low potent opioid (Tilidin) covers what's left.

Now let's see how the withdraw of the Benzodiazepines is going. After we added the SSRi my response to Benzodiazepines improved and the Depression caused by them went away but I think it is better only take them when you need them.

When you take them daily and a situation presents itself where is a lot of stress and you would need a Benzodiazepine all you can do is raising the dose which is not as effective as taking a Benzodiazepine without having a tolerance.

I'll report in this threat how things are going in the next week. I am not going for a fast withdraw. Today my dose was 10 mg of Diazepam and I will leave it like this until my body adapted to the reduction and then I will continue with 8 mg and so on. I am not in an hurry since I was taking an average dose of 2 mg Clonazepam since June.

I really have to admit that Bezndozepines can be very helpful managing RLS. Sometimes even long term use is much better then these ugly sleeping problems as long as they don't cause depression, paradox anxiety or sedation during the day.

When you suffer you really should try every reasonable option. This time Clonazepam was very helpful managing a severe crisis.

Benzos are not just bad and addictive. This was something I had to learn.

When my Physician prescribed Benzodiazepines in the past I always was worrying about addiction and really always went for a rapid withdraw which was worsening all my symptoms but all I wanted was getting rid of the Benzos because Benzos are equal to the devil and bad. I was doing a lot of harm to myself by doing this rapid withdraws.

Now my perspective torwards Benzos finally seems balanced.

I still don't get it why so many people try to abuse Benzos or like them so much.

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

Post by ViewsAskew »

Hope that it keeps working!
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.

cornelia

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

Post by cornelia »

Good for you that you are feeling a lot better; it gives hope for the future.

There is one thing I don't understand: do you mean that Escitalopram can take away the augmentation effects? If so that is really worth knowing.

Corrie

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

Post by QyX »

cornelia wrote:Good for you that you are feeling a lot better; it gives hope for the future.

There is one thing I don't understand: do you mean that Escitalopram can take away the augmentation effects? If so that is really worth knowing.

Corrie


Yes. That is what Escitalopram is doing.

When I only take Escitalopram it is worsening my RLS.

When I only take Pramipexol I augment after a couple of days.

When I take both drugs together things are balanced out. I am taking Pramipexol together with Escitalopram for 3 months without any problem.

Before that the longest time I was able to take Pramipexol was around a week.

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

Post by Polar Bear »

Qyx - I take the antidepressant citalopram. I googled it along side escitalopram to see what the difference is. They are very similar in how they work, citalopram has a longer half life and it is cheaper, at present. The strength and dosage appears to be different.

I found that citalopram did not negatively affect my WED symptoms and after 3 weeks I started to feel the benefit in my mood. I started, and remain, on the the very low dose of 20mg. My WED medication is ropinerole which is similar to pramipexol.

IMO it is sometimes worth trying the antidepressant, I fought against it for several years for fear of it worsening WED.
When I did take the AD - I hadn't realised how flat and low I felt until I felt better.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
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Location: Berlin / Germany

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

Post by QyX »

Escitalopram is very smiliar to Citalopram. You could say that Escitalopram is the active part of Citalopram or in other words: Escitalopram is the racemate of Citalpram, see http://en.wikipedia.org/wiki/Racemate

So 20 mg of Citalopram equals 10 mg of Escitalopram. Some say that Escitalopram has less side effects and is (a bit) more effective then Citalopram. Many say there is no difference at all concerning side effects and effectivness and Escitalopram was only designed to make more money.

I tried Pramipexol and Ropinirole alone for a couple of times. Pramipexole worked up to a week, Ropinirole only two days. Then I was augmenting heavily.

My Physician told me that he had patients who came to him with high doses of SSRi and they were complaining about RLS symptoms. He reduced the dose and the symptoms went away. Maybe you weren't affected by the negative effects of the SSRi because you were already on a working RLS medication.

Looks like the interactions between Depression and RLS and SSRi and DAs are complex and need a lot more research.

It would be great thing if SSRi could influence the augmentation in general and not only in my case. If an SSRi makes it possible to take DAs without augmenting on them, this reason alone would create enough benefit to take a SSRi-Antidepressant.

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