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

Re: My pharma diary

Postby QyX » Sat Aug 15, 2015 8:37 pm

I knew what Chlorprothixene was when I was taking it. I also knew about Abilify.

I took the Chlorprothixene to reduce Seroquel side effects and increase sedation, so that I will fall asleep faster and more reliable than with Seroquel alone.

The Amphetamine I took was for reducing the dopamine antagonistic effects caused by Chlorprothixene and Seroquel. I always knews that it is only matter of months until this will blow up in my face.

Abilify is some kind of crazy drug. A lot of people have a weird response to Abilify. Abilify is not only partial Dopamine agonist, it is also a partial dopamine antagonist. No whonder strange things will happen when you take this drug with RLS.

For me it worked for about 2 weeks and improved RLS but then I started to feel tired, anxious and weird.

After everything I read and experienced opioids are by far the safest and most effective drugs for RLS.

figflower

Re: My pharma diary

Postby figflower » Sat Aug 15, 2015 10:48 pm

Good luck with the opioids then!!!

figflower

Re: My pharma diary

Postby figflower » Sun Aug 16, 2015 6:48 am

Meant quinpirole. Interesting article.

https://minds.wisconsin.edu/handle/1793/49183

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

Re: My pharma diary

Postby QyX » Sat Aug 22, 2015 6:33 pm

Whatever happened, since I quit Seroquel I still can sleep.

Two weeks of working in a hospital are over. I have to start at 6:30 a.m. and get up at 5 a.m.

With Seroquel this never would have worked. Around 1 a.m. I wake up for like 10 minutes and sometimes I am awake 2 hours after I went to bed but I always fall asleep within minutes again.

Things are in a way normal like they haven't been in ages.

Last week I started reducing the Carbamazepine. I noticed that it can cause urinary urgency. I had to go to the toilet every 5 - 10 minutes. My dose is now 800 mg instead 1.200 mg. My symptoms improved. My dream would to reduce it to 0 mg but I don't know if that is realistic. It helps a lot with the pain.

ViewsAskew
Moderator
Posts: 14642
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: My pharma diary

Postby ViewsAskew » Sat Aug 22, 2015 9:15 pm

Wow, bathroom every 5 to 10 minutes must be very difficult.
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
Moderator
Posts: 6698
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: My pharma diary

Postby Polar Bear » Sat Aug 22, 2015 9:36 pm

I do hope your urinary urgency continues to improve, and very happy for you that things are veering towards normal.
Good luck :)
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

figflower

Re: My pharma diary

Postby figflower » Sun Aug 23, 2015 3:04 am

Qyx, what pain? If you don't mind me asking?

figflower

Re: My pharma diary

Postby figflower » Sun Aug 23, 2015 3:21 am

QyX, you may find that your RLS is significantly reduced if and when you lower the Carbamazepine. Never heard of that drug and googled it. It has a similar structure to the tricyclics (which tend to be very bad for RLS) and I guess in general ups the amount of serotonin in the brain. Which also is supposed to be bad for RLS. The below list from the Mayo Clinic includes it as a drug with the potential for causing something called "serotonin syndrome." It's listed right next to the anti-migraine meds. Good luck with whatever you try!!!

http://www.mayoclinic.org/diseases-cond ... n-20028946

ViewsAskew
Moderator
Posts: 14642
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: My pharma diary

Postby ViewsAskew » Sun Aug 23, 2015 4:39 am

Figflower, have you read this whole diary? You may want to so you understand what QyX is going through. QyX is a medical student who has had RLS/WED in a way few of us can imagine and has had long before taking any of these medications and knows more than many of us about how the body works.
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.

figflower

Re: My pharma diary

Postby figflower » Sun Aug 23, 2015 5:13 am

I'm helping.

figflower

Re: My pharma diary

Postby figflower » Sun Aug 23, 2015 6:32 am

Yeah Viewsakew I read her history. And with each drug that she has dropped she has felt that much better. Her RLS started at what I estimate to be about 11 or 12 years of age. That's puberty, fluctuating hormones and possible anemia that was very likely the cause of her RLS. She was tired, moody, agitated and mis-diagnosed. Shame on the medical community. Drugs were thrown at her, fast, long, and hard, for well over a decade. Her dopamine receptors are for crap as a result of the meds and a genetic pre-disposition to RLS.

I stand by my advice to her. Skip the melatonin. Try one tablet of iron-bis-glycinate on an empty stomach at night. But don't be standing after about 45 minutes because you'll be out cold.

Viewsaskew, if you don't like me, don't respond to my posts and I won't to yours.

Polar Bear
Moderator
Posts: 6698
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: My pharma diary

Postby Polar Bear » Sun Aug 23, 2015 12:53 pm

Figflower - It was with disappointment that I read your comment in your post of 6.32am - as follows:
if you don't like me, don't respond to my posts and I won't to yours.

We are all here for the same purpose, to seek help and to possibly help someone from our own experiences - in a friendly and supportive fashion.

Your above mentioned comment has come across as rude --- let's keep postings within the boundaries of good manners.
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

Joanie60
Posts: 179
Joined: Thu Mar 15, 2012 2:48 pm

Re: My pharma diary

Postby Joanie60 » Sun Aug 23, 2015 1:49 pm

One of reasons I so look forward to reading this forum is exactly that, Polar Bear, we are all so supportive of each other. I am sure I have done and said things on this board which have the old timers shaking their heads but constant chronic pain can make us all a bit crazy :-). I have gotten so much support, unconditional support, that this is the one place I feel I can be totally honest and open about my RLS.

I notice that FigFlower just joined a couple months ago. Those of us who have been around awhile are in awe of QyX's journey and knowledge and unrelenting dedication to figuring out his disease. I only wish he would finish Med School and move to the US and help us out!!!

I hope everyone has a great Sunday and takes one moment out to send healing hugs to RLS sufferers around the world :-)

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

Re: My pharma diary

Postby QyX » Sun Aug 23, 2015 4:31 pm

Figflower wrote:QyX, you may find that your RLS is significantly reduced if and when you lower the Carbamazepine. Never heard of that drug and googled it. It has a similar structure to the tricyclics (which tend to be very bad for RLS) and I guess in general ups the amount of serotonin in the brain. Which also is supposed to be bad for RLS. The below list from the Mayo Clinic includes it as a drug with the potential for causing something called "serotonin syndrome." It's listed right next to the anti-migraine meds. Good luck with whatever you try!!!

http://www.mayoclinic.org/diseases-cond ... n-20028946


No, you got the wrong idea about Carbamazepine. It does not worsen RLS at all and there is lot of medical evidence out there that Carbamazepine helps with chronic pain when this pain is caused by neurological disorders. There is also some evidence who suggests that Carbamazepine will improve RLS symptoms.

There is a complex pharmaceutical interaction between Quetiapine (Seroquel) and Carbamazepine. So it is more then likely that after I stopped Seroquel dose adjustments will be necessary.

Carbamazepine mainly works as a sodium channel blocker and also has some GABAnergic effects but nothing to do with interfering in serotonergic neurotransmission.

And for those drugs who who up the amount of serotonine in the brain like SSRI... the serotonin syndrome is a rare event. I just spoke to an experienced Psychiatrist who treated more then over 20.000 patients. He told me that over all the years only one patient developed a serotonin syndrome. It happened right after taking an SSRi antidepressant.

I see that you are trying to help but the way you are doing it is not helping. Before you don't have basic knowledge about the drugs I take and how the affect me you can't really "help" me with pharmaceutical advice.

There is also no scientific evidence that melatonine worsens RLS. I take it to induce a feeling of tiredness, of feeling of wanting to go to bed. My feeling is that it helps me to be in sync and maintain a normal day/night structure.

I can't see how any of your treatment advice could improve my situation. For the moment I feel well. I have no trouble sleeping and getting out of bed.

I experienced with iron in the past and noticed no benefit. Hard to tell if melatonine is really helping but for the moment I have that impression. I use this board to report and discuss my experience with drugs so that others might benefit from this information and I welcome every advice and hint but my impression is that you are not really understanding the things I have been through. My medical situation improved a lot when I started taking Carbamazepine and now you are telling me that it is bad for me even though you know nothing about the drug and had to google it?

And btw: it is not she, it's he.

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

Re: My pharma diary

Postby QyX » Mon Aug 24, 2015 6:04 pm

ViewsAskew wrote: QyX is a medical student who has had RLS/WED in a way few of us can imagine and has had long before taking any of these medications and knows more than many of us about how the body works.


I don't know if this is too much honor. In the past days I am thinking a lot about what I did accomplish ... after all this insanity and testing over 50 drugs now cutting it down to only two, sleeping without any problems, being able to work 8 hours in the early morning until 2 a.m. and then study for school, cleaning my apartment, shop for groceries ... all the nasty stuff I hate so much ...

It was only back in July when I was fighting to find some sleep ... I tried starting to find sleep at 9 p.m. but it wasn't until 6 a.m. next morning I finally fall asleep. Everything was at risk again and then it turns out like this.

Somehow ... this is like getting up from the wheelchair after you have spent like 10 years in it.

I really do know a lot but it is not that easy to translate. What I think and say, now it comes from so much theoretical knowledge and experience but still I am no doctor and only at my 2nd year at med school.

Now I've spent over 16 years trying to figure out what is wrong with me, taking pills, going to therapy, seeing shrinks and doctors.

Right now I reached optimal results concerning my RLS. There is no way it could be any better.

It is very weird when after so many years you finally fixed your sleep and energy problem. Transition into normal life is complicated. When you always operate in a state of emergency, you always calculate with the worst ... it is some kind of war I've been through ... starting with the the ADHD Diagnose when I was 14, the suicide of my father when I was 16, the psychosis when I was 19 related to my autism spectrum disorder (asperger type). All the years of wrong treatment for bipolar disorder which only worsened my RLS ... then you finally figure out that you not only have ADHD but you are only suffering from autism spectrum disorder too which basically means that you the way you understand life is turn upside down and you have to accept that you were wrong about many many basic things in life.... this made it possible to figure out that I was suffering from RLS. But until then so much damage was already done.

I think you are not supposed to survive and understand something like this. You are supposed to drugs and die in pain or commit suicide. I really did nothing else then figuring out what was wrong with me. That was all I did from the moment forward were I understood that I have major issues who need attention.

I can't tell what kind of person this experiences have formed. Right now I work at psychiatric hospital. Personal there loves me but I'm hiding my past. They have no idea what I've been through. I only told them some very basic stuff about RLS and the suicide of my father to explain my interest in the topic but why I know and understand so much, they don't know. Right now they think I am a intellectual gifted young guy who also seems to be very nice and polite.

For so many years I was so far away from normal, regular, age appropriate problems. Hiding all this isn't hard but before I find a way to integrate this past and transform my life into a more stable route I still won't be well.


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