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: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: My pharma diary

Post by Joanie60 »

Such awesome news!! Enjoy every second...and congrats on the exercise commitment!! Way to go :-)

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: My pharma diary

Post by ViewsAskew »

Great news! I do hope it lasts.

Hard decision about the blog. I can see why you want to. But, it's hard to have something define you and this might.
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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Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: My pharma diary

Post by Polar Bear »

Wonderful :clap: :clap:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX

Re: My pharma diary

Post by QyX »

Things are still working out for me. It is the 4th week at Meed School and I am doing fine.

However I am back to taking Seroquel (Quetiapine) because without a potent a sedative I have severe trouble falling asleep.

So the problem here is that Seroquel is a dopamine antagonist which is likely to cause RLS symptoms. To avoied that I take a small dose of Dextroamphetamine (2,5 mg) together with Seroquel. This method is working fine for me but when I don't go to the gym and loose my energy things are getting complicated, too.

So I need to follow a strict routine and I am still look for a way to get rid of the Seroquel because it is simply not good.

In the morning I take Dextroamphetamine to get started and kill the effects of Seroquel but this is not always working 100% but at least I am able to study.

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: My pharma diary

Post by Joanie60 »

Congrats!!! It is a wonderful relief when our "regimen" works!!

Polar Bear
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Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: My pharma diary

Post by Polar Bear »

Qyx - I am so pleased for you, to be back at med school and managing your symptoms, well done.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: My pharma diary

Post by ViewsAskew »

Until they figure out what causes this dratted disease, it's likely never going to be easy for you. Your perseverance is to be admired.
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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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: My pharma diary

Post by badnights »

You're a fighter. You will always haul yourself out of whatever hole Life pushes you into.

The blog might consume more energy than you want to devote to it. Even though it might have a cathartic effect, and it would surely raise awareness and help people, the benefits to you might not be enough to balance the negatives you mention. You will make the right choice for you, I am sure.
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

Re: My pharma diary

Post by QyX »

Back I am, with some more news. I wrote this text for an other discussion but I think it perfectly fits in this little pharma diary.

I am on 8 mg Hydromorphone twiche per day. 16 mg of Hydromorphone equals 60 mg of Oxycodone and 120 mg of Morphine.

Opiods are a part of the solution for severe cases but they are often still not able to solve every problem connected to RLS.

In my case opioids completly "kill" the desire to move my legs but only about 60% of the pain symptoms can be managed by opioids. So I have to take Carbamazepine, an old antiepilectic. Gabapentine and Lyrica did not work for me.

But there is still the insomina and unforunately opioids can cause and worsen insomina. With Oxycodone it was impossible to sleep. With Morphine it worked fine for some months but then I developed a tolerance to the sedating potential of Morphine and insomnia was back. Adding Carbamazepine back then solved the insomina problem for a while and made me 100% pain free but after a while insomnia was back. I raised the Carbamazepine dose to the point were I developed side effects I could not tolerate and then cut back a little. This again worked for some weeks but then I reached a point were insomina was back.

I was 100% pain free, legs didn't move, I was able to rest peacefully and tired in my bed but unfortunately I still wasn't able to sleep. No matter how tired I was, I was not able to sleep during the night. It felt like there is a big mountain I could not climb. I was able to sleep in the morning or late afternoon but never in the night. It was impossible. Nothing I tried worked. It was very frustrating. I could stay awake for 48 hours but I still couldn't sleep in the night. Only in the morning after 7 am or in the later afternoon. Working or studying is impossible when you only can sleep like this.

So I started taking Seroquel again. This was huge step. I was a big fight to withdraw from antipsychotics in the past but this have been the only meds who allowed me to sleep during the night. I tried other antipsychotics like Abilify, Clozapine, Zyprexa but Seroquel was still the best working med. It meant that it took up to 3 1/2 hours after I took Seroquel until I was able to sleep. This again was a huge problem. Seroquel has potent anthistaminerg properties and also works as a dopamine antagonist. Bad bad bad for RLS. Seroquel made me gaga for hours until I finally found sleep and then when I woke up I had severe problems getting out of bed and my general motivation was low. I slept during the night but with no motivation and energy I wasn't able to accomplish anything during the day. It was a big struggle until I could move my **** out of the house and do something useful!

Part of the solution was taking Dextroamphetamine. Unfourtenately it is more complicated then just taking it and get a energy and motivation boost. When the night was bad and I woke up a lot Amphetamines somehow kept me awake during the day but they don't give you any motivation or desire to do things. I started experimenting. Together with 100 mg Seroquel I took 2,5 mg Dextroamphetamine at night. This improved things. Seroquel stopped affecting my legs so much before I started sleeping and also the process of falling asleep happened a lot faster. And when I woke up during the night with weird feelings in my legs caused by Seroquel, a low dose of Dextroamphetamine improved the symptoms and normally I was able to go back to sleep.

And when I woke up in the moring and took a high enough dose of Dextroamphetamine most of the time I was able to get out of bed in time and somehow manage my day. But still, motivation was low. I was always on the edge. My sleep was better but still I was missing motivation, my memory was bad and after I got home from University all I wanted to do is to chill in the bed. I was even to tired to watch a short TV show or sit at my desk for 60 minutes and prepare some stuff for school for the next day. I was sleeping at night and somehow managing my day but it was complicated, my memory was bad and I simply hadn't enough energy and of course because of this no motivation. And then you have to buy groceries, wash your clothes, take of other appointments .... It was big fight every day .... and then these 2-3 hours every night were Seroquel was making me gaga/dizzy and I still wasn't able to sleep. 2-3 hours lost every night! You can't study Medicine in this state!

Then, magic I got the idea to take L-Dopa/Levodopa again. 50 mg. And it was magic and still is. It only takes about an hour to find sleep after I take Seroquel and the hole process is much smoother now. Also my short term memory improved a lot. Remebering details from school became so easy now and my whole working memory seems to be improved. I rarely wake up during the night and my Seroquel dose is stable now. It was always going crazy, between 100 and 400 mg, sometimes I was even adding Haloperidol ... and Carbamazepine is leveled out now, too. In the past I was taking 1.600 mg at night and I was always close before I was developing unpleasent side effects. Now I am down to 800 mg.

So, opioids are a part of the solution but in most cases they won't do it alone. If you want to function like a normal "healthy" person when it comes to sleep you will have to experiment a lot and consider unusual therapy options and drugs. With Dextroamphetamine and Levodopa I block the negative effects of Seroquel. In this combination it became the (almost) perfect sleeping drug for me. 100 mg is a low dose and Carbamazepine increases the metabolism of Seroquel so I am not sedated or dizzy in the morning.

It is a complex combination of high potent drugs and it is still hard accept for my Doctors that this works for me. For my old Doc everything is okay but the new ones are for the moment not happy with the Dextroamphetamine. They prescribe everything else but they are scared by the Amphetamines and can't really tell if I am only making this up or really need them. So my old Neurologist is still prescribing the Dextroamphetamine while I am working o finding a Doctor at my new place who is willing to prescribe the Amphetamines and wants to work with my new Neurologist.

It has been fight, always.

I am optimistic that I won't augment on the Levodopa. It only happened when I take doses higher then 100 mg for 7 days or longer or when I take Pramipexole and Ropinirole. I am quite surprised how strong I benefit from Levodopa, especially when it comes to memory, motivation and libido/sex drive. For the moment I am quite happy.

Treating this insomia issue without worsening the RLS seems to be a complicated problem.

QyX

Re: My pharma diary

Post by QyX »

The way I take my drugs on an average day is like this:

morning - noon - evening - night/before bed (dose in mg)

Hydromorhpone: 8 - 0 - 8 - 0 (opioid dose stable since August 2013, no need to take fast acting opioids for breakthrough symptoms)
Dextroamphetamine: 10 - 7 - 5 - 2,5 (dose is stable, there are quite a few days were I take nothing or significantly less in the morning and during the day, the 2,5 mg at night are must. I am sometimes able to sleep without the 2,5 mg before bed but in 90% of the days I need them. Sometimes it happens that I have to take additional 2,5 mg during the night)
Carbamazepine: 0 - 0 - 400 - 400 (coming down from 1.600 a day. I could take the complete dose before bed but looks like that I fall asleep faster then I take 50% of the dose at early evening, high doses of Carbamazepine can block the stimulating of Amphetamines but positive effects for RLS persist no matter how much Carbamazepine I take, this also explains why it is no problem to take Amphetamines at night)
Seroquel: 0 - 0 - 0 - 100 (average 8 hours of sleep. When I wake up and do nothing, take my first Hydromorphone pill and just rest I can get up to 10 hours on a weekend. On a school day I take Dextroamphetamie when I have slept for at least 7 hours)

I have absolutely no problems with libido/sex drive, weight gain, tolerance or side affects.

What I have is this dizzy, sedated feeling when Seroquel starts to kick in but when I have to get up during the (e.g. toilet, drinking water) it is not a problem. I just feel normally tired and it is no problem to go back to sleep again.

I spent many many years to figure this all out. I had a Doctor who was willing to prescribe almost everything as long as I had a reasonable reason and reported truthfully the effects and the way I used the drug. This helped the most but I often lost motivation to try a new drug. It was this Doctor who motivated me to give Dextroamhaptemine a 2nd shot. It was his idea to start taking during the night because he remebered that I had sometimes weird effects on stimulants and was sometimes able to sleep after I took a higher dose of Amphetamines when I had a phase of insomnia.

I visited experts for RLS and sleeping disorders in almost every region of Germany but that didn't help much. It was just to complicated. They would have need to see me for some months or years to figure things out with me. At least they all agreed that I need the opiods. So I have it in writing from quite a few doctors that because of augmentation and severe RLS and chronic pain I need to take potent opioids like Hydromorphon. Guess I will never have to worry about getting opioids for my whole life. Too bad they never caused any euphoria or "good mood" at any point of the treatment.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: My pharma diary

Post by badnights »

My sleep problem is very similar to yours. I can get to sleep by 3 AM, but I am waking up every hour or less. I can't sleep well before 7 AM due to some kind of insomnia, nor after 10 AM due to WED sensations, except sometimes there is a spell in the afternoon when I can sleep. As you said, this is no way to live. It is impossible to get anything done or to be a part of anything. I have an accomodation at my workplace that allows me to come in late and work late, but it's rough even getting to work by 11 AM most days.

I take hydromorphone (reduced from 18 mg to 12 mg over 7 months by going on a low-carb, high fat, high-vegetable, gluten- and dairy-free diet), zopiclone to sleep, levo-carbidopa 25/100 "as needed" which means once a night but never more than 2 nights in a row (unless I get desperate and make a bad decision, which I do sometimes) and not more than 4 times a week. I also need modafinil during the day, otherwise I am totally unmotivated and all I want to do is sleep. I also take 75 mg Lyrica from time to time to help sleep and avoid taking more hydromorph or levo-carb. The levo-carb is seductive, because the effects are fast and almost magical, and I can sleep like a baby; but I have augmented on it so I am very leery of it.

I seem to be taking the same types of meds as you other than the Seroquel; another difference is that modafinil is a different class of stimulant. Like you, I blame the insomnia on the opioid. I also can sleep after I take the stimulant. These commonalities might point out a direction for fruitful research.

I noticed after I started taking the modafinil that I fell asleep easier and was more alert during the day. Now after what you have written, I wonder if there might be some benefit to taking a bit at night. I used to take it first thing in the morning and again at 1 or 2 PM. Someone convinced me to drop the afternoon dose because it was probably keeping me awake at night, but my bedtime has actually crept later and later since I stopped the second dose.
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

Re: My pharma diary

Post by QyX »

I can say that Oxycodone for 100% was causing insomnia. Swichting to Morphine solved the insomina issue for a while but then it came back. Taking CBZ helped a while but then it came back. Then swichting to Hydromorphone solved the issue again for a while but it came back.

I can't really tell if the opioids contribute to the insomnia. I am only certain for Oxycodone.

Might be worth a try to take a small amount of Modafinil at night. I prefere Dextroamphetamine because it is easier to dose. (I use drops, one drop is 1,25 mg)

ViewsAskew
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Re: My pharma diary

Post by ViewsAskew »

Interesting that you can sleep after taking modafinil, Beth. So can I. I might be interested in trying to take it as you were, Beth, and see what happens. But, I honestly am not sure that it helps my brain function better. Yes, I am more awake, but my brain seems fuzzy when I take it. I don't have a script (my insurance company will not cover it for RLS, only for apnea), so I've been using samples only when needed. I only have about 18 tablets left.

No question that methadone causes my insomnia. Unfortunately, I've tried almost all other opioids and they all cause me to become "tight" - jaw clenched, easy to anger, short-tempered. I might be able to tolerate the psychological change in my behavior, but because my muscles in my face, neck and shoulders are so clenched, I get terrible headaches. The whole time I'm on them, I have a constant headache along with neck and shoulder stiffness and pain. I do not remember if insomnia was a problem - I was too focused on these other side effects.
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
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: My pharma diary

Post by badnights »

That's intolerable. I wouldn't be able to stand it. I'm so grateful that I can tolerate so many of the medications I've tried.

I took about 1/4 of my daily dose of modafinil a couple of hours ago. I will try this for a few nights, to see what effect it has (if any. It's a pretty small dose. I take 100 during the day, so I'm adding about 25 - roughly, because dividing a pill into quarters is not very accurate.)
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

Re: My pharma diary

Post by QyX »

Here are some more news:

I had to stop the L-Dopa. The reason why is somehow not surprising. Taking this drug daily caused augmentation (50 mg at night). Too bad. At the beginning it really was improving things but then things got worse every day. After I realized this developement stopping it was easy.

So I was suffering from my old problem ... that it takes so long for me to fall asleep ... even with Seroquel and then I developed one of these hyperacitivitie phases were sleeping becomes really difficult and my old solution for this was taking Haloperidol, some real potent dopamine antagonist, the most potent antipsychotic used in Germany. Manging the neurological side effects is easy with the drugs I posses but it also effects your cognition and emotions in a really negative way. Studying becomes impossible and it really kills your motivation.

This time I tried something new. I tried taking a small dose of a low potent classic antipsychotic. The one I use is Chlorphrotixene (Truxal). It is not available in the US but there are many other drugs of this class avaible, at least 10 ... maybe even 20. I used it because I had it on hand. I started with 30 mg together with the Seroquel. 30 mg is not a high dose for Truxal and when you are used to take drugs like this it is even less but it really affected me a lot and I had very deep sleep for over 14 hours. It took some days until the situation stabilized. I reduced the dose to 15 mg and then a couple of things happened:

- it only takes about an hour after I take Seroquel and Truxal to make me fall asleep ... this is a big improvement, the way Truxal shuts down my brain is much more comfortable then the way Seroquel does it.

- my sleep quality improved. Now I get deep sleep for around 7 hours and after I wake up I am ready to have a 14 hours day, even 3 days in a row. No problem. I am full of energy and 100% focused.

- memory, motivation, cognition now improved day by day. I was able to stabalize my higher energy level and because I get a real good sleep every night it stays this way

I would say that I have a real sick brain in a way. It completely fails to initialize sleep. It just keeps going and going until it crashes, I develop symptoms of anxiety, depression and loose my motivation for studying. Then I only start lying around bed all the time, start thinking about a lot of if's and spent the rest of my time watching stupid TV shows. Bad!

I would consider my insomnia extreme and the Doctors I spoke to were somehow unwilling to really investigate treatment options. It always appeared to complex, to massive to hard to treat. So it was left so my expertise and experiments.

I do think that insomnia is a real big problem in RLS. It is easy to treat the WED/RLS Symptoms with opioids but the insomnia stays and the standard treatment for severe chronic insomnia (low potent antipsychotics or drugs like Seroquel or tri- and tetrazyklik antidepressents) wont work because of all the antihistaminergic and often dopamin antagonistic and serotinin agonistic effects RLS/WED Symtpoms get severe again and this drug induced restlessness can't be treated with opioids. You can increase the dose by 50%, by 100% and 200% ... it won't help a bit. I tried that all and before you go completely nuts you go back to the opioids alone.

In my case Dextroamphetamine is really blocking the negative effects of these drugs and somehow the Carbamazepine helps too. It can happen that I wake up during and need a 2nd dose of Dextroamphetamine but then I can go back to sleep withing in minutes.

I never thought that it will be possible to treat this severe disorder I have that well. Adding Truxal was as big a step as adding Carbamazepine who made sleeping possible at all again.

And it is not really complex at all. Around 8 pm I take my 800 mg of Carbamazepine and 1 hour before I want to sleep I take my Seroquel and Truxal together with 2,5 mg of Dextroamphetamine. That's it. It is just some pills. Yes I am on opioids 24/7 too but this is not something I really feel or I am aware of. I only think about this fact when I have to take the pills.

My point is: we have so many drugs available in the western world. When you are not happy with your situation, bad sleep quality, bad mood, anxiety and the depression it really makes sense to try different drugs and experiment. It may take years but if you follow some rules it is in my opinion likely that after 5 years you might have reached a point were quality of live is totally acceptable. Having a good night sleep is the key element for a stable mood, motivation and all this other small things connected to that like being able to laugh etc.

And it makes sense to try drugs already used in a different combination again. It makes sense to look over table. There are so many drugs who have the possibility to improve sleep. If things don't work out for you yet ... there is a great chance that they will for you one day but you need to continue trying. I tried around 55 drugs. That's a lot but it could have been worse. Gather information, do your own research. Don't stop when you have asked for 2nd opinion on your treatment. Get a 3rd, 4th, 5th 6th opinion.

As far as I know nobody is investegating the effects of Stimulants (Amphetamines, Methylphenidat (Ritalin), and Modafinil) on RLS/WED Patients. Here you can find some reasons why it can make sense to take these drugs at night.

Medical School really started to consume me and from what I understand there wont be a cure anytime soon for RLS/WED but the drugs already available have a huge potential to improve the situation for us. I know that for sure. It will take years until new drugs will be available and even more years until a drug with a completely new mechanism will be available. I would say it is time to intensify the investigations of the treatment options already available.

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