My pharma diary

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.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

My pharma diary

Postby QyX » Tue Feb 25, 2014 10:59 pm

Before I open up a new discussion for each drug I experiment with I thought it is better when I create just one thread were I write down how life is going for me.

Last drug I was experimenting with was Abilify and I have to say that this drug is worth a try when you suffer from therapy resistant insomnia. My problem with Abilify was that I was sleeping up to 15 hours a day. This was just too much, I couldn't accomplish anything at all! So I stopped taking the drug.

From the trial with Abilify I learned that it is possible to take drugs who normally worsen RLS/WED if you just find the right counter drug.

Seroquel can be pretty good sleep aid but unfortunately it is also an dopamine antagonist, so it can worsen RLS. I tried adding mixing Ropinirole with Seroquel but that didn't work out well. On Ropinirole I augment from day #1.

Next approach was with Pramipexole 0,18mg. In the past I was able to take Pramipexol for a maximum of 4 weeks and in a dose up to 0,7 mg before I started augmenting. My approach this time is staying on the 0,18 mg. Pramipexole is a (very) potent dopamine agonist on the same receptors who are affected by Seroquel. So my thought was that Seroquel and Pramipexole will level. In the best of all cases I won't augment because Seroquel is preventing the augmentation and Pramipexol prevents the Seroquel from causing side effects like restlessness, sensations and leg pain.

I tried it and it worked. It was not perfect but I was sleeping! Over the day I still had painful sensations were Morphine wasn't helpful. So I started taking Levodopa (L-Dopa) again. I started with 25 - 50 mg per day and it helped. From past experience I knew that I could take doses up to 200 mg per day. When I take higher doses I start augment but as long I stay at max dose of 200 mg I will be fine.

My sleep improved and improved and today I had the best day for over 2 years. I can't remember the day when I had fewer symptoms then today. I felt completely normal and 100% symptom free.

So right now it is like this:

Morphine: 20 - 20 - 30
Seroquel: 0 -0 - 25 - 50
Pramipexole: 0 - 0 - 0 - 0,18
L-Dopa: 0 - 0 - 0 - 100

I am gonna stay on this until I augment or develop other side effects who force me to change anything. Should I have the feeling that I need to increase the dose of Pramipexol I am gonna stop the drug and replace it with a Benzodiazepine for 1-2 to weeks so that my receptors can reset. Then I can go back to Pramipexole. If everything fails I always can go back to to Abilify for some days and then cycle to a Benzodiazepine and back to the Pramipexole/L-Dopa routine.

What I learned from all the experiments is how my brain responds to drugs. Now I know which drugs I can take and which drugs I can't take and also which drugs I can mix.

The combination I use now is kinda tricky. Taking Seroquel without Pramipexole comes with quite a number of side effects. WIth Pramipexole the effect of Seroquel is much smoother and pleasanter. It doesn't hit you so hard and the feeling of being tired comes more natural.

Right now I hope that I can stay on this combination for a while and avoid the use of Abilify or Benzodiazepines.

Yes, I know ... taking 4 drugs just for RLS doesn't look optimal but I really tried a lot, meaning almost every drug who can be used to treat RLS.

Since I have been diagnosed with RLS I never felt so good like today. I was so relaxed, chilled and balanced. It was wonderful and I am optimistic to get more days like today.

For me it seems the hole RLS/WED drug therapy is a big trial & error thing.

Polar Bear
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Re: My pharma diary

Postby Polar Bear » Tue Feb 25, 2014 11:27 pm

It is indeed trial and error and you have certainly put yourself through it to get to where you have had a wonderful day.
I hope you have many days like today.
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

badnights
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Re: My pharma diary

Postby badnights » Wed Feb 26, 2014 7:49 am

Hope it keeps up, QyX.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Wed Feb 26, 2014 8:40 pm

badnights wrote:Hope it keeps up, QyX.


It must. If it doesn't ... I won't be able to go to medical school.

badnights
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Re: My pharma diary

Postby badnights » Wed Feb 26, 2014 10:16 pm

If it doesn't, you will keep finding other things that work and you will get through med school "by hook or by crook", as the saying goes. But you've fine-tuned your regimen pretty nicely and it should keep you going for a while.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Feb 27, 2014 12:28 am

badnights wrote:If it doesn't, you will keep finding other things that work and you will get through med school "by hook or by crook", as the saying goes. But you've fine-tuned your regimen pretty nicely and it should keep you going for a while.


It's not perfect yet. It still takes too much time to fall asleep.

I am going to supplement Melatonin and limit my sleep to a maximum of 8 hours.

Seroquel is a potent sedative but it takes a while to put me to sleep.

I might try higher pramipexole doses (0,35 mg) but I can't risk augmentation.

YES, the situation is much better then in the past months but there is still room for improvement.

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Fri Feb 28, 2014 6:07 pm

My mood switched and right now I'm slightly depressed with low energy and tiredness.

Just talked to my doctor about it and he thinks L-Dopa is the cause. He recommended not to take L-Dopa every day. So for the 1st time augmentation is not my problem but then my mood is. Gahtsch!!!

He told me to replace it with a Benzodiazepine or raise Pramipexoel from 0,18 to 0,35 for some days.

I am going to raise the Pramipexole and hope that I don't augment as long as I take it together with Seroquel.

I also have to say that I started supplementing Testosterone on my own. A friend of mine is a doctor and so we just went to the pharmacy and bought a 3 months supply of testosterone injections. The backround is that long-term opioid intake can drastically reduce of testosterone. Low testosterone is related to low energy, tiredness, sleeping problems, anxiety, feeling of weakness, loss of libido ...

I had my first injection 7 days ago and today m 2nd. I have to say that I felt much better two days after the first injection. I developed a feeling of well being I haven't had in a very long time and today, some hours after the injection my mood significantly improved. Not that all of depressive mood disappeared but I feel much better now.

Yes, of course I know that it is not advisable to start long term testosterone supplementation without proper monitoring so I am going to see a specialist as soon as I have the energy for it.

As far as I understand the medical literature, low testosterone can be a real problem in relation to long term opioid treatment.

I wouldn't be surprised if low testosterone is a significant secondary reason for sleeping problem in RLS patients who take opioids.

Here in Germany testosterone level testing is covered by the insurance if you take opioids.

I don't know how important these findings are for women but I've read about improved mood, libido and sleep in the context of testosterone supplementation in "older" women.

I would recommend to check your testosterone levels if you are on long term opioid treatment and have any of the symptoms mentioned above, regardless of gender you have.

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Sat Mar 01, 2014 3:01 am

So here wo go. It is 3:50 am and I am awake and not sleeping.

I raised Pramipexole to 0.35 mg and did not take L-Dopa today. As a result Seroquel worked quicker and its effects felt much stronger but later it caused sensations in my calf muscles. They felt like stone and I had to take a Benzodiazepine to relax the muscles. Bad, bad, bad!!!

So maybe it wasn't a good idea to raise the Pramipexole and completely stop the L-Dopa.

Right now I think it may be best to take only Benzodiazepines for the next 2-3 days to avoid augmentation and then go back to 0,18 mg Pramipexole and 25-50 mg L-Dopa.

I know that I am on the right track. I had two good weeks with the combination of Seroquel, low dose Pramipexole and 100 mg L-Dopa but looks like L-Dopa can cause a depressive mood. My doctor said it is not unusual. I have to say that I am taking an antidepressant (Bupropion / Wellbutrin) and since I became aware of my depressive mood I raised the dose from 150 mg to 300 mg but no effect so far.

L-Dopa is so powerful and strong. No drug has stronger effects on my WED symptoms. I would love to take it daily but when it makes me depressive it doesn't help much not having WED symptoms.

Looks like I am going to cycle between L-Dopa + Pramipexole + Seroquel and Benzodiazepines to avoid augmentation from Pramipexole and depression from from L-Dopa.

badnights
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Re: My pharma diary

Postby badnights » Thu Mar 13, 2014 12:52 am

The backround is that long-term opioid intake can drastically reduce of testosterone. Low testosterone is related to low energy, tiredness, sleeping problems, anxiety, feeling of weakness, loss of libido ...
...
I don't know how important these findings are for women but I've read about improved mood, libido and sleep in the context of testosterone supplementation in "older" women.
I asked my doctor if opioids could affect this type of thing but she brushed it off as getting old. I was a little ticked off by that but I haven't brought it up since. I am so easily shut up.

I was going to ask if you had any info about this in women, before I saw the other part. Did you read this information on chat boards or in real literature? I have only seen it in chat boards, which are not very informative. (except this one :D )
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Sat Mar 15, 2014 12:16 am

Real literature. I am going to see a specialist soon. My own Neurologist agrees with me that low testosterone in context of long term opioid treatment might become an issue.

At the moment I'm trying Carbamazepine again. First days are promising. Going to write in more detail soon.

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Mar 27, 2014 11:04 am

I said I am gonna write more about Carbamazepine and here it is.

Right now it pretty much looks the way that I reached a big breakthrough. For the moment I sleep every night and I fall asleep at a speed I never have been before without being sedated during the day. It is also possible to take naps during the day.

It's like 10-15 minutes in bed and I sleep. I never had this in my life before, even when I was young. It always took me terrible to long to fall asleep and because of that I avoided going to bed more and more. I just hated it to lie down because I was so restless (mind & body).

Now it is all different. At the beginning I was tired during the day, without energy but I wasn't sedated. My mind was clear. But this became better with every night. Especially in the past 7 days I could notice that I have more energy during the day. I started to feel more awake every day and this didn't impair the time I needed to fall asleep.

Indeed falling asleep became so easy that I can't believe that this ever was a problem before!

And I only take 200 mg of Carbamazepine at 9 pm. And the drug doesn't sedate me. The drug is just doing its magic and I can sleep. I don't have the feeling that I am taking a drug at all. The hole procedure, falling asleep and getting up, became so natural. It's unbelievable and I had positive effects from day #1.

For the first time I am really optimistic that I achieved the breakthrough. Carbamazepine is doing all the things I expected Lyrica (Pregabaline) or Gabapentin can do. Carbamazepine is an old and cheap drug, available in most countries of the world. It is one of the oldest and wide spread used anticonvulsants on the market so it is a little bit surprising for me that many people here are using drugs like Lyrica and Gabapentine but like nobody is writing about Carbamazepine.

For now it is unbelievable for me how good the effects are that I achieved. And because of the positive effects of Carbamazepine I was able to reduce my Morphine dose by 20 mg, from 70 mg to 50 mg.

Right now I have the hope to live a complete new life. It's just getting better every day.

ViewsAskew
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Re: My pharma diary

Postby ViewsAskew » Thu Mar 27, 2014 12:19 pm

That is great news.
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 pharma diary

Postby badnights » Mon Mar 31, 2014 6:36 am

That's something to smile about!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Tue May 13, 2014 12:52 pm

Looks like I am finally getting real better. Sleeping hasn't been an issue in the past weeks. In fact I was sleeping way too much, sometimes up to 20 hours (!!!) and when I got up I was still sleepy and tired, simply couldn't get out of the bad. I already was worried about having the chronic fatigue syndrome.

But it looks like the opioids have been the issue. The Carbamazepine allowed me to reduce the opiods to zero. Now I am completely off since 5 days and every day I get more energy. My mood and energy improved every day since the withdraw and today I am having the first euphoric mood swings since 2 3/4 years!

I am still sleeping good and duration has reduced to 7-8 hours which is fine by me and could just stay like this.

Right now it looks like Carbamazepine saved my life.

Maybe the horrow show has now found its end?

There have been many dark months in the past years.

I am developing hope again.

Stupid opioids. I was taking them too long. They killed all my energy and motivation.

Now I feel like I am reborn.

ViewsAskew
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Re: My pharma diary

Postby ViewsAskew » Tue May 13, 2014 7:53 pm

The opioids are definitely issues for many of us.

Hopefully this will last a long time.
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.


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