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: 361
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Wed Sep 26, 2018 11:23 pm

badnights: Zopiclone might be one factor you not having the energy you want to have. I get it. There is good reason why you take it and for patients like us taking a hypnotic daily is the better choice then not taking them.

When you were able to sleep without your normal dose of Zopiclone, that would suggest that your physical dependence is low if there even is any at all. However it is still very much possible that you will suffer from some kind of withdraw when you stop Zopiclone, even when you reduce it slowly and the insomnia then could be falsely interpreted as insomnia related to RLS. In this case get a long acting low potent Benzodiazepine (Diazepam 5 mg tablets), start a dose of about 7,5 to 10 mg daily at night and reduce the dose by 1-2 mg every 7 to 14 days.

As for my situation: Switching to Oxcarbazepine seem to have resolved quite a few problems I had in the past 12-18 months and it appears I had quite a few side effects from Carbamazepine who I am was not fully aware of. However since I've taken Benzodiazepines in the past 4 weeks before I switched from Carbamazepine to Oxcarbazepine I am currently in the progress of doing a minor Benzodiazepine withdraw, started at 15 mg Diazepam and reduced the dose by 1,5 to 1 mg per day.

And only after I am done with the withdraw I'll be able to know how effective or not effective Oxcarbazepine really is. For now the results are promising but I learned from the past before shouting out that a specific drug is working. But since I switched I became way more active, I was able to sleep every night.

I'm currently also experimenting with vaping nicotine. It seems it really helps when I wake up at night, vape a bit because it only takes 10-20 minutes until I am able to sleep again. I will write more about this when I know how big the impact really is.

The only thing I can say for sure is that I don't want to go back on Carbamazepine since it was greatly reducing my overall energy, even when it was working at its best and taking it a few years, it seemed that in the last year it also was worsening RLS more and more after it was losing its analgesic properties.

badnights
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Location: Northwest Territories, Canada

Re: My pharma diary

Postby badnights » Fri Sep 28, 2018 3:21 am

fingers crossed for you, QyX. I am watching for updates on the nicotine experiment.

My third night with the tincture was unhappy and I ended up taking some zopiclone. And that was the last of the tincture. Not enough data to be sure of anything. I will try to get some more once it becomes legal and do a better one-person trial.
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
Posts: 361
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Wed Oct 03, 2018 11:09 pm

I will write more about nicotine once I am more sure about it effects. However I won't be sure about its effects until I have stopped nicotine for 1-2 weeks again and see how it is without nicotine.

Just two days ago I finished my withdraw from Diazepam and currently I am suffering from hypersomnia. I sleep like 16 hours a day since 3-4 days and have almost no motivation and energy.

I am not sure why this is but there could be couple of reasons for this

1) my brain is recovering from taking of benzodiazepines and just wants normal, regular sleep
2) my dose of Oxcarbazepine is too high
3) I am depressed or
4) it is the mixture of all those factors

I can't really tell atm and I have to wait and see how it goes.

I also have been diagnosed with folic acid deficiency which is most likely a side effect of long term consumption of antiepileptics like Carbamazepine which I have taken for over 4 years in very high doses (over 3.000 mg / day in the last months, on average about 2.400 / day)

Symptoms of folic acid deficiency can include weakness and major depression. So I am not sure what is really going on and we have to wait.

I started to take folic acid pills couple days ago but so far nothing has changed.

But what all this suggests RLS and the treatment of RLS is such a complex thing it is much more than just leg pain or restless legs and insomnia.

I also can say that I had a phase of severe hyperinsomnia when I started Carbamazepine years ago and always suffered from being way too tired too early in the day. Exercising did help but then I often lacked the motivation to exercise because suddenly everything switched around and I was barely able to sleep at all.

However it seems that Oxcarbazepine has less side effects then Carbamazepine and may be able to take a much lower dose relative to Carbamazepine with still having the hope that I will able to develop a normal sleeping pattern and then exercise on a more regular basis to keep my energy and mood up.

QyX
Posts: 361
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Tue Oct 16, 2018 9:17 am

So unfortunately I have to say that I catched a depression and I don't have a psychiatrists to treat me right. While my neurologists is qualified in psychiatry too, right now I don't even have an appointment, regular waiting for a new one is about 3 months and going for an "emergency appointment" seems to question here if she is even able to treat my case properly with the limited time she has available.

Saying that, I have been to many (many many many) doctors and the treatment I get from her is way better then I got from others. She is also a reliable source for opioids and we have a good understanding about which dose is acceptable and which not.

Also I have to admit that I had lots of minor shorter episodes of depression. I blamed them on my sleeping trouble connected to RLS but this episode seems more serious. Without a doubt I need to find a psychiatrist here in Berlin for long-term treatment, especially because I don't tolerate so many drugs. However waiting times for a first appointment are at least 4-8 weeks. Unfortunately this town has way too many patients who need psychiatric help and not enough psychiatrists who are able to provide the necessary treatment.

I have a few left-overs from an antidepressant I at least tolerate but it is unclear if it will work at all. I took lots of different antidepressants in the past. Some were beneficial short-term but in the end I always had to stop them because of unacceptable side effects, mainly related to worsening RLS symptoms and causing sexual dysfunction.

I am not surprised I got a episode. Carbamazepine is a potent mood stabilizer and with that drug gone and be always being close to catch an episode, it was just set to happen.

Besides that, I have some hope that those depressive episodes maybe play key role in my insomnia and being super tired, especially in the morning, even when I slept all night. It is an angle I kinda denied for myself because I hated the perspective of going down the psychiatric root again since it cost me so many problems in the past. However there is no alternative now. I will run out of pills fast and my current state is just not acceptable like having no energy whatsoever, wanting to sleep all day without being really able to, no appetite, no motivation for anything except watching b-class TV shows I already watched.

The combination of severe RLS like I have it and depression, it is a ugly thing since most drugs normally used to treat depression can't be used. This will be a nightmare for any doctor and I afraid I will get sent to all kinds of specialists who in the end don't know more than I do.

Oozz
Posts: 54
Joined: Wed Oct 11, 2017 8:09 pm

Re: My pharma diary

Postby Oozz » Thu Oct 18, 2018 2:35 am

I’m sorry to hear that you are having a hard time right, please know that I am rooting that you will get through this. I envision you writing a book about your life to give inspiration to others going through these tough times.

Being stuck in the house sleepless and unmotivated is the worst, hopefully you can find something else to busy yourself with. During my toughest bouts over the past year and half I picked up video games and coloring books (I’m 32) both seemed to work pretty well for relieving stress and helping me pass the time. Neither takes too much mental effort.

As for the depression, I think I suffer from this too. I’ve been doing a lot of meditation and floatation tanks to help me lift my mood. Also, I sit in the sauna for 20-30 minutes a day because I’m still suffering from a pretty debilitating knee injury. I think this has done a lot for me because I can get a some of the health benefits and workout high without too much physical stress.

QyX
Posts: 361
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Mon Oct 22, 2018 4:57 pm

If I ever make it through this, I would maybe write a book about it. There is a lot I learned and would be worth passing but it kinda doesn't matter unless I make it myself.

I read a lot and sometimes I play video games or TV shows but I always feel guilty when I do since the feeling of doing nothing is horrible when you are fully aware that at some point I have to make my own money, otherwise, from what will I live in the future?

The worst phase of my depression is over, the Bupropion (Elontril / Wellbutrin) helped but I still can't sleep at night unless I take Benzodiazepines. And I can't take Benzodiazepines long term because that would lead to serious depression and anxiety. So I only take them when I have some important to do next day.

I am trapped and atm I see no way out and neither I know anyone who sees one. I've tried way over 50 drugs so far, way more then most patients will ever take in their hole life.

Seeing other people live their lives and being stuck myself hurts a lot.

I know that life is not fair and I am still better off then millions of people in poor countries but I so badly just want to do something, learn something work and have social relationships. Those sleeping problems took (almost) everything away from me.

When I am honest to myself, I feel worthless because there is nothing I can do. I am completely dependent on the goodwill and support of other like my family. This is a never ending disaster, going on for 17 years now.

I am desperate.

stjohnh
Posts: 594
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: My pharma diary

Postby stjohnh » Mon Oct 22, 2018 5:21 pm

I am really sorry you are having to go through this.
Blessings,
Holland

Polar Bear
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Location: N. Ireland

Re: My pharma diary

Postby Polar Bear » Mon Oct 22, 2018 7:02 pm

QyX ... My heart goes out to you. I agree that there are millions of people in poor coutries who may be worse off... but still, these symptoms and the torture that they deliver is your/our torture and your/our misery to be dealt with as best we can.
You have so much to offer
If I ever make it through this, I would maybe write a book about it. There is a lot I learned and would be worth passing but it kinda doesn't matter unless I make it myself.

To be honest I think a book of your experiences with RLS, the hopes and the fears and the worries for the future would indeed be worth passing on. as it is, in real life... the good/bad, the high/low, And that would be whether you/we find peace from RLS or not. It would be a true story. And not like the wishy washy articles that we read where someone finds that a bottle of tonic water and a bar of soap worked a miracle.

I really do apologise to anyone who ever has found comfort from a bottle of tonic water and some soap.
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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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: My pharma diary

Postby badnights » Wed Oct 24, 2018 6:42 am

Qyx, what do you think about the role of the gut biome in depression, and in neurological and autoimmune disorders? And the role of diet in depression?

I have read some things, like intermittent fasting causes a reduction of dopamine release which upregulates dopamine receptors, increasing sensitivity to dopamine and making it easier to be happy.

I'm very serious about diet and nutrition because of the huge impact it had on me - (reduced symptoms enough so that I could reduce meds from 18-21 mg to 9-10 mg hydromorphone).I wanted to organize some more thoughts, pull together things I've read here and there, but it;'s taking too long, and I want to get you thinking seriously about these things. So here are random notes that I haven;'t organized or attached references to:

- Avoiding hyper-processed, hyper-palatable foods, and stuff like sugar and rapidly digested carbs,as part of a regular diet, will avoid constant dopamine stimulation and consequent downregulation of dopamine receptors.
(- as an aside, it will also avoid repeated prolonged stimulation of insulin receptors and consequent insulin resistance)

- A diet high in EPA coincided with 20% reduction in anxiety (and 14% reduction in one marker of inflammation) ch2 #13

- Consuming lots of fructose is bad (not in small amounts of whole fruit, but in the large amounts found in hyper-processed foods): inside the body, fructose induces lipogenesis; in the gut, where it builds up when blood levels get high, it interferes with tryptophan absorption, which can impair serotonin production, which can lead to depression. Ch 3 #25
- apparently, high-fructose diets have been associated with increased intestinal permeability, and inflammation caused by leakage of bacterial metabolites into the bloodstream


Anywa that's all I got for now.
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.

debbluebird
Posts: 1902
Joined: Mon May 21, 2012 3:27 pm

Re: My pharma diary

Postby debbluebird » Wed Oct 24, 2018 11:54 am

Beth, glad to hear to explanations. I agree.

QyX
Posts: 361
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Oct 25, 2018 3:16 am

Hey beth,

in short: I think the topics you mentioned are all very important but overlooked in mainstream medicine simply because there is no big financial benefit for the medical industry in general. The industry wants to sell expensive insurance, expensive drugs and doctors want to bill you for complicated tests using expensive machines build by high-tech companies. Best case scenario is that you have some chronic illness that requires long term treatment with expensive drugs and modern technology and instruments to monitor the disease.

Except the patient nobody will benefit when you go on a healthier diet. (Okay, indirectly the economy could benefit when people are less sick, can work more, have more money to spend, the government will earn more taxes etc. but this is not how our western societies work).

Having said that, things are not as cynical as I said but all this money making plays an important. Medicine is an industry as any other, just more regulated.

In my opinion there is already overwhelming evidence that everything you mentioned can play a big role in depression, neurological and autoimmune disorders. In short patients can have the very same symptoms but the cause is completely different. For example there is a form of epilepsy that mainly affects children who can be treated with a diet that avoids carbohydrates.

My own experience with diet changes is also very interesting. Back when I was still taking antipsychotics and believed to have a bipolar disorder, I started going to the gym 3-5 times per day and only ate carbohydrates once per week. The effect it had on me was extreme. I had so much more energy, all my problems with anxiety and depression went away and I started feeling like superman. Of course going to the gym that often played a role too but only after changing my diet I had this extreme effects.


Some comments regarding sugar and fructose: back in the stone age, sugar and fructose was rare and hard to get as you can imagine. It was always hard to find enough "energy" (food) to survive. So that is why sugar / fructose gives us such a powerful dopamine kick. Some people even can get addicted to food. Back in the stone age, they had no way to concentrate fructose in a way we are doing it now with orange juice, apple juice etc.

People think they drink something healthy but processed orange juice is just as bad as coca cola.

However: processed food is not all bad. Our life expectancy is getting bigger and bigger and better drugs and medicine is not the only reason. It has also a lot to do with better and safer food. Just there is a lot of stuff on the market that is unhealthy and I must say, from my German perspective the situation in the U.S. is really bad. So many people are overweight which will cause Diabetes Typ 2, and all kinds of cardiovascular diseases including heart attacks which is one of the most common factors for death in the industrial countries. And of course, health problems like Diabetes Type 2 and being overweight are also risk factors for mental problems.

I have no scientific data about the effects of a specific diet on RLS but I am sure it is worth experimenting and see if symptoms improve or get worse. That is something everyone can do by themself. It might be especially successful when you started having RLS at an older age. I started having RLS symptoms as a teenager and I am such a severe case that genetic factors most likely are a dominant factor. However this does not mean that it is impossible that I could improve my symptoms with a better diet.

I know that I consume too much sugar and not enough vegetables and food. But I never had problems with my weight, even when I took drugs that make other people gain 20 - 40 kg, I was still able to loose weight, if I wanted to and control and keep the weight for years. I was super skinny as a teenager and now I am just average. Guess I am one of the lucky ones but that does not mean my overall mental health, energy and depression or RLS can benefit from a better health.

Just before I started writing this text, I was eating some flakes with milk that contained a lot of sugar and now I can feel my feet burning up, like I've not taken my medication even though I took a higher dose of opioids then I do on average days. But there are other factors who could have caused this and just because there is a (statistical) correlation between doesn't mean that this is the cause of the symptoms.

Unfortunately it is all very complicated and every body and brain is different. What is helping some people could worsen the situation for somebody else, even when they have the same disorder. A systematic approach with careful observation is my method to work out what is the cause for a specific effect. But that takes a lot of time and it is super easy to jump to the wrong conclusions.

badnights
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Re: My pharma diary

Postby badnights » Thu Oct 25, 2018 7:14 am

A systematic approach with careful observation is my method to work out what is the cause for a specific effect. But that takes a lot of time and it is super easy to jump to the wrong conclusions.
Amen. It's very complicated and no one of us has a life span long enough to run these experiments properly. It ends up being inconclusive but you have to try. I don't know if I improved because of no gluten, no dairy, no sugar, added vegetables, some other diet thing, nothing to do with diet but added weight lifting, dopamine receptors finally recovered 6 years after augmentation, two or more of the above, or something else entirely. But even tho I don't know exactly what caused the improvement, I suspect diet, and I will keep the diet, and keep the exercise. And hopefully continue to improve.
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
Posts: 361
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Oct 25, 2018 10:26 am

Most of the time it is not one single thing that improves a medical problem. It is rather a combination of various factors.


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