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

Re: My pharma diary

Postby Joanie60 » Fri Jan 16, 2015 11:27 pm

Congrats on finding a "cocktail" that works! I think you have a most valid point: we need to be proactive in figuring out what works for us. You are lucky you have doctors who will work with you :-)

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

Re: My pharma diary

Postby QyX » Thu Apr 30, 2015 11:47 pm

It's been a while but here I am with a new update:

Meanwhile things (my health situation) are much better then I ever expected. I finished the 1st full semester at Medical School and passed 3 of 4 exams. Me and a friend failed the easiest exam by 1 point because we thought we will pass without studying. Looks like we overestimated ourselves but that's no drama because we can repeat this test in July.

Right now I study full time Medicine and go to the gym 4 times per week for 90 Minutes. During the week I sleep around 7 hours and on the weekend 9-10. I was able to build up a nice amount of muscles and right now I'm dieting to get rid of my body fat. From the moment on I decide to go sleep it takes about 60 minutes until I am able to sleep, a bit longer on the weekend.

And I do this all with severe RLS. For me it's somehow like magic but for those who followed my story since I washed up here know that a strict systematic pharmacological approach, discipline and most important unlimited optimism were the key for this development.

I did change one more thing in the past months. In the winter I had a lot of colds with fever, likely because I have lived isolated when I returned to school my immune system couldn't handle all the pathogens around me. So I wasn't able to go the gym. When I was finally able to return to the gym I noticed that I was recovering badly. At first I thought this is because of the long time I wasn't exercising (3 months) but somehow this didn't explain it. I needed 5-7 days until I was able to go the gym again even I was sleeping enough. But somehow my sleep was disturbed, I woke up a lot and had to take extra doses of Dextroamphetamine to continue sleeping.

When holidays started things got worse. Sleeping became a real issue again and for the moment I wasn't able to figure out what's changed. I didn't realize at the time that taking Dextroamphetamine at day and night was stressing my body a lot but during holidays I gradually stopped taking Dextroamphetamine during the day. It wasn't my plan but it just happened. Then my sleep quality drastically improved and I learned that I wasn't benefiting from taking Amphetamines during the day at all. I recovered quickly and went to the gym up to 5 times per week again.

I also learned that there is an other path to reduce Seroquel side effects. 10 minutes before I take Seroquel I take a very low dose of Chlorprothixen (15 mg). This prevents a stuffy nose caused by Seroquel. It is really annoying when Seroquel totally blocks your nose and you want to find peace sleep. Also it smoothes the way you start to feel Seroquel working in your brain. The hole process of going to sleep feels more natural though it is all induced by potent drugs.

So right now I take:

Hydromorphon: 8 - 0 - 8
Oxycodone Instant Release: as needed, usually I need around 10-15 mg per week.
Carbamazepin: 0 - 0 - 400 - 600 (Opioids only can deal with around 60% of my RLS symptoms and Carbamazepine also allows me to handle Seroquel. Without Carbamazepine I would not tolerate Seroquel and Chlorprothixen)
Chlorprothixen: 0 - 0 - 0 - 15
Dextroamphetamine: 0 - 0 - 0 - 3,25 (together with Carbamazepine Amphetamines allow me to tolerate Seroquel. I tried it without Amphetamines here and then but it never worked. I was really tired and my legs were feeling somehow okay but I still could feel that something in my legs didn't feel right and only Amphetamine could fix it. Maybe for a lot of people Mirapex / Pramipexole / Ropinirole will do the trick here but this very often leads to augmentation. Amphetamines don't have this problem.)
Seroquel: 0 - 0 - 0 - 250 (150 - 175 mg at the weekend. Less stress, less medication needed)

I am convinced that there is a pharmaceutical resolution for the vast majority of patients suffering from RLS. From what I've read here I would say that my RLS is really severe and most people writing here seem to have had much less problems then I had. (screw the grammer). I was socially isolated for so many years because of RLS. My complete life was destroyed and reduced to resting on the bed because I was so tired but unable to sleep. But, and this is the story here: I was able to rebuild and come back stronger then ever before.

Patients should demand a solution for their problems and continue trying new drugs and drugs in different combination. You really can get a real severe RLS under control when the doctor is willing to use all the available drugs on the market. Unfortunately doctors have their favorites and know nothing about a lot of drugs who in theory have some potential for RLS patients. So it is up to the patient to ask and demand specific drugs but this is complicated again: doctors often refuse and for the patient it is difficult to know what to ask for. There are so many drugs and when it comes to predict how drugs will interact when you combine then even the greatest experts easily can go crazy. There are no guidelines what is the best approach and in which order to try drugs when the conventional options have failed.

For around 10 years I am studying drugs related to neurological, psychiatric and pain disorders and still know so little even though I swallowed 56 of them alone. If you invest a tremendous of patience you can come up with something like this. It is a a real bizarre combination but even my new "conservative" Neurologists does prescribe me this medication.

A normal doctor in an average patient-doctor relation would never have the time to figure out something like this. It is frustrating because I am convinced that there solutions for most people out of work because of RLS and RLS related disorders like depressions.

Maybe maybe maybe I will start writing a professional article (in German) about this hole process. In all this years I logged the development and wrote a lot of texts about side effects, dosage etc. I have thousands of pages I could evaluate.

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

Re: My pharma diary

Postby Joanie60 » Fri May 01, 2015 12:45 am

You are reaping what you have sown!! All that work, all that learning, and at last you can follow your dream. And your experience will benefit so many others, I firmly believe that!! Keep up the good work, and special congrats for working out the gym issues so you can keep working out.

ViewsAskew
Moderator
Posts: 14897
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: My pharma diary

Postby ViewsAskew » Fri May 01, 2015 4:11 am

I agree, QyX, that there really are solutions for most of us. And that it's almost impossible to get in many severe cases because the doctors will not help. I hope you do write the article! We need more out there to show doctors that they CAN help if they try.

And such great news that you passed most of your exams!
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: 6890
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: My pharma diary

Postby Polar Bear » Fri May 01, 2015 7:48 am

Well done with getting some control back over your life - and good luck with your exam in July.

Wouldn't you make a very understanding RLS doctor !!
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 » Fri May 01, 2015 12:11 pm

I for one would fly to Germany to be your patient!! (Full disclosure for those who don't know it: I have a brand new grandson growing up in Germany lol)

I'm headed back at the end of May for a week. Dreading the flights, of course, but my Doc agreed to up my methadone on a very strictly "as needed" basis, then wrote script for 60 pills!! (she prescribed 1 to 1/2 per day). Insurance only filled 51 of them but what the heck!

Her concern, and I believe her, is that we are at the end of the solution train and she wants me to be on methadone for as long as possible. I told her that I read here (and sorry I cant give credit to the author cause I don't remember!!) to shoot for 90% relief, not 100%. She said: EXACTLY!!! And it is so true. I would be taking 1.5 methandone per day and getting 100% relief. But if I get my head in a 90% is a lot better than 0% relief, then I can alternate between 1.0 and 1.5 when I really need it. And delay tolerance to 1.5 tablets!!

Doesn't take much to sidetrack me!! Sorry QyX: congrats again and please give thought to specializing in RLS!!!

Joanie

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

Re: My pharma diary

Postby QyX » Sun May 03, 2015 8:59 pm

Thank you all!

At the moment I really can't tell in which area I will specialize after med school. For many years I was absolutely sure that I'm going to be a Psychiatrist but since I understand how complicated and stressful psychiatric patients are gonna be on the long term I started to make other plans but no matter what I'm gonna do or be at some point, for sure I will treat RLS patients because there is not that much to learn anyway since I know the hole disorder by own experience.

Polar Bear
Moderator
Posts: 6890
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: My pharma diary

Postby Polar Bear » Mon May 04, 2015 2:59 pm

Whoop whoop :clap: :clap:
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
Moderator
Posts: 4571
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: My pharma diary

Postby badnights » Tue May 05, 2015 2:08 am

I am convinced that there is a pharmaceutical resolution for the vast majority of patients suffering from RLS. ....You really can get a real severe RLS under control when the doctor is willing to use all the available drugs on the market. Unfortunately doctors have their favorites and know nothing about a lot of drugs who in theory have some potential for RLS patients. ... for the patient it is difficult to know what to ask for. There are so many drugs and when it comes to predict how drugs will interact when you combine then even the greatest experts easily can go crazy. There are no guidelines...
You are so right. Most doctors won't/can't spend the time to research all the possibilities as carefully as you have, let alone patients who are mostly not inclined to medical study of any kind. It would certainly pay off for any WED/RLS patient who did manage to do the research - assuming they could find a doctor to partner with.

I hope you do write up your findings and find somewhere to publish them ... at least for starters, you could try throwing together an outline, even. These things are always harder to do than they seem at first (at least, for me they are) and you probably don't have much time, given your studies.

I tried modafinil at night and it didn't seem to have any effect on my sleep or on my RLS/WED symptoms. The dose was low, though; only 25 mg. After reading you again, I am inspired to try again at a higher dose. I've been taking 100 mg in the morning. I might try the same at night for a few nights.
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 05, 2015 4:40 pm

Modafinil is also an interesting drug. It is easier to get because here in Germany Doctors wont need a narcortic script for prescribing Modafinil. It would be interesting to investigate its use in RLS. I would say you can take as much as needed but somewhere there will be a point were it starts to activate your mind.

At the moment I take 3,25 mg of Dextroamphetamine at night. For someone new to Amphetamines without RLS, this dose would cause some mild euphoria and motivation to something like write a text or read something interesting. Since I developed RLS Amphetamines stopped to have this effect on me but when I take too much at night, let's say 7,5 mg, I couldn't sleep too because I would sense some kind of stimulus in my brain.

When you have Dextroamphetamine as drops they become easy to dose you can start as low as 0,25 mg night. I suspect that Amphetamine/Dextroamphetamine could have all the benefits of a classic Dopamine Agonist without all this augmentation crap. But there is one issue: the stimulating effect at the beginning. There are ways around that like taking Seroquel which is my solution. But I can't tell if I would tolerate the Seroquel without the Carbamazepine.

I also see a lot of potential in Carbamazepine. Some RLS books do mention it as an alternative treatment when DAs failed but it is rarely used. Carbamazepine has a potent mood stabilizing and in general a calming effect. The Seroquel makes me gaga every night but I can tolerate it because of Carbamazepine and the Dextroamphetamine.

I know in the U.S. are pills of 5 mg Dextroamphetamine available. There is always a way to cut this dose in half or 5 mg of classic Amphetamine can be used. Amphetamine is made of 50% Levo- and 50% Dextroamphetamine. The Levoamphetamine doesn't have any psychotropic effects. I don't know about Canada but for sure they will have some kind of Amphetamine pills available.

The amphetamines are are really a key player. At this point, without them I couldn't sleep!

The thing is that Doctors won't thought of using a potent stimulant to treat a sleeping disorder. It sounds somehow crazy but RLS is after all I experienced some crazy weird disorder.

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

Re: My pharma diary

Postby QyX » Fri Aug 14, 2015 7:29 pm

The event I was so worried about happened. Seroquel / Quetiapin side effects increased more and more to an unacceptable level. Even when I took Seroquel around 8 pm in the evening, I wasn't able to sleep before 4 am in the morning. After taking it, Seroquel was causing heavy sedation for an hour but then it somehow was activating my mind and sedating my body. It was a shitty feeling.

I knew: when I continue taking Seroquel, I won't be able to go to school anymore. The two other meds I was taking to manage Seroquel side effects stopped working for me. My life was at high risk to become messed up again.

So I did the only thing I could. I stoped taking Seroquel and the two other meds (Amphetamine and Chlorprothixne, an other neuroleptic drug)

And magic happend: yes, I had withdraw symptoms like exzessive sweating and nausea but no anxiety, restlesness or sleeping problems. Instead of being sedated for 14 hours a day I was sleeping 3 - 8 hours per night. It was complicated to control the time I was able to fall asleep but I was able to manage my day.

Since 3 weeks now I am only taking Hydromorphone and Carbamazepine and it is working, for now. I am scared and anxious. Every day I still fear that I might not be able to sleep but somehow I am sleeping.

I take Melatonin 5 mg to initiate tiredness. Without, I don't start to feel tired. It helps me to remember to sleep.

I can't tell what has changed. In the past I slept 1-2 hours per day but you need much more to function and go to med school.

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

Re: My pharma diary

Postby Joanie60 » Sat Aug 15, 2015 2:27 am

You are sleeping DESPITE your fear of not sleeping! That is terrific. I think you can relax now and stick with your Hydromorphone and Carbamazepine and enjoy the ride. As my journey has taught me, we have to be grateful when we find a combo that works, for however long it works. No sense in worrying about tomorrow, it will come soon enough!

Congrats on making the change happen. We need you to finish Med School!!

figflower

Re: My pharma diary

Postby figflower » Sat Aug 15, 2015 4:03 am

Hi Qyx, just wanted to let you know that melatonin gives me restless body, not just restless legs. I was taking it and didn't even realize what it was doing. I've had mild, intermittent RLS since youth but it became every night because I was taking the melatonin every night. I would also sometimes take Benedryl and Tagamet in the evening as needed and then the RLS was out of this world. And yet, as I've said on here before, one tablet of iron bis-glycinate would relieve the symptoms despite all of the RLS unfriendly substances I was taking. Until I upped the melatonin to 3mg then I had to take two tablets of the bis-glycinate. Once I stopped the melatonin and the Benedryl and Tagamet (at least not in the evening) I no longer had nightly RLS and could stop the iron. The iron only works for one night and is not a cure. Better than the DAs.

figflower

Re: My pharma diary

Postby figflower » Sat Aug 15, 2015 4:21 am

Here's a quote from an article by Baylor College of Medicine about RLS. It mentions the fact that melatonin can make RLS worse. It also mentions that iron might be good but so little is absorbed from the GI tract. They obviously never met iron bis-glycinate. Not only is it well absorbed it may even cross the BBB. The BBB part is my theory, but it is well absorbed. Here's the quote:

"No two patients respond identically to treatments for RLS. All treatments are felt to provide only symptom relief, rather than a permanent cure for RLS. Therefore, treatment should only be started when the benefits are felt to justify any potential side effects and costs. RLS is a chronic condition and, therefore, treatment decisions should take into account potential long-term issues and be individualized to the particular needs of the patient. Both dosing and medication changes are often required to maximize benefit and minimize the risk of tolerance and side effects over time.

It is clear that intense physical and even mental activity can forestall RLS symptoms. The problem is of course that symptoms are worse when people are trying to fall asleep, which is not a convenient time to exercise. There are certain situations, such as a plane flight, where intense concentration (i.e., a challenging video game) may improve symptoms.

No natural or over the counter (OTC) medications consistently improve RLS. OTC sleeping medicines such as Benadryl and melatonin may actually worsen symptoms. Some patients report that calcium and magnesium help them, but when these were examined scientifically they did not show any benefit. OTC iron supplements may help some people, however iron pills only mildly increase iron in the body. Less than 1 percent of the pill is actually absorbed from the stomach. Because of potential side effects patients should always check with their physicians before taking any OTC medications.

By far, the most consistently effective treatments for RLS are prescription medications. No medication has been specifically developed for RLS, but fortunately medications developed for other condition often help RLS symptoms.

figflower

Re: My pharma diary

Postby figflower » Sat Aug 15, 2015 4:55 am

Qyx, the Chlorpro might be a dopamine ANTAGONIST from what I've read. So might be ok for during the day but maybe avoid at night? You've done a lot of research and trial and error with drugs but have you analyzed what might be making your RLS so severe and other people's? Are you on birth control? That might be a problem. Do you tend to over-eat in the evenings? Studies have shown that intermittent fasting or consistently under-eating will up-regulate our dopamine receptors. Anerobic exercise might also up-regulate. Some people feel that their RLS is made worse by their IBS/constipation. So don't be constipated and don't over-eat. "An ounce of prevention is worth a pound of cure."

I saw you mentioned Abilify. I've read about people who took that drug and when they stopped it they developed RLS whereas they never did before. And some develop it while on the drug. The only logical explanation is that it is the world's best DA and that it down regulates people's receptors so much that even non-RLSers get RLS. Abilify has as its active ingredient a quinolone. Quinolones, from what I've read, might just be the world's most powerful dopamine agonists. Do you really want to go there? That's the problem with trial and error - needless suffering. By the way, quinine is in the quinolone family and that is probably why so many people get relief from tonic water. And certain antibiotics fall into that family as well and might be why some people get relief while on antibiotics. Personally I think that they get relief because the antibiotics lower the number of gut bacteria. I think too much gut bacteria and/or the wrong kind of bacteria is the root cause of most if not all RLS cases. But that's for another day. No one really knows, not even researchers, what a healthy gut microbiome looks like so what's the point of messing around with probiotics. We might need less, not more???

I do trial and error with natural substances and if you want to know which have worked and which have not just let me know.


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