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

Re: My pharma diary

Post by QyX »

ViewsAskew wrote:The opioids are definitely issues for many of us.

Hopefully this will last a long time.


If I am gonna take opiods again then just on irregular basis. Over the time they killed all my energy and I still wasn't able to sleep. Together with the Carbamazepine they made me sleep endlessly.

I am one week off now and the situation is much better but still not perfect. Sometimes my legs start moving late in the night around 3 pm but now without any pain. Low doses of Clonazepam are helping (0,125 - 0,25 mg) but then again I sleep too much when I take Benzos. I hope that I will reach a point were Carabamazepine alone fills all my needs or that I only will need opioids once or twice per week.

I also have to say that in the first year I had no choice to take opioids simply because I had so much pain in my legs. However it is interesting that over the months I was needing less and less opioids. I can't explain how the pain in the beginning was so intense and why it got better and better over the months.

Carbamazepine really now covers most of my symptoms but even only light leg movement still can keep me from sleeping. I notice how the Carbamazepine is helping me but taking more doesn't improve the symptoms right now. 50% of the days I now can sleep without additional medication. I hope to reach 80-100%.

Will report how the situation develops in the next days and weeks.

QyX

Re: My pharma diary

Post by QyX »

Okay, here I am with some more news:

I am still able to sleep with Carbamazepine and I found the reason for my extreme fatigue/tiredness. It was a "simple" depression.

For now I was able to stop all opioids (the Morphine) for 4 weeks but then more and more RLS symptoms came back. The Carbamazepine still allowed me to sleep but simply more and more physical symptoms (pain) came back. So I had to restart the opioids. I had no choice. But I still was very tired, no energy, no motivation, no interest in things at all.

I decided to start taking the antidepresspent Escitalopram (5 mg again). From past experience with this SSRi I knew that it will worsen my physical RLS symptoms but other antidepressent haven't worked for me. I tried Doxepine, Bupropion, Imipramine, Mirtazapine and Trazodone in the past. No luck.

A couple of hours after I took the Escitalopram my energy came back. It became more difficult to fall asleep but it was still possible. I also had to change from a lower potent opioid (Tilidin) back to the Morphine and now I am real back on the opioid road but there was no choice. I simply can't stay depressed just to be able to stay away from the opioids. Now after a week on Escitalopram simply everything is so much better now. Every day gets better and better and after 6-7 hours of sleep I wake up and I am full of energy and interests.

Ya, falling asleep is a bit difficult now because now I sometimes have euphoric thoughts in night hours but it is not so bad. With the Carbamazepine alone I was only hanging around in bed all time and event going to the bathroom or the kitchen was too much for me. Leaving the house for a walk was an impossible thought.

Have to say that 5 mg Escitalopram is a very low dose because you can go as high as 20 mg.

For the first time in years I feel quite optimistic that I will overcome and manage my past problems.

I have needed this feeling so badly.

I am quite happy now.

(Opioids still suck somehow but what can I do?)

Polar Bear
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Re: My pharma diary

Post by Polar Bear »

So good to hear the optimism in your post. 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

QyX

Re: My pharma diary

Post by QyX »

Polar Bear wrote:So good to hear the optimism in your post. Well done :)


Yes. It took me a while to come around.

Thanks.

Polar Bear
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Re: My pharma diary

Post by Polar Bear »

I have never used an anti convulsant medication and am very interested in how well it has helped you. It might be possible that I could consider substituting this for my sleeping medication which does not appear to have much of an effect. Hmmm... worth thinking about.
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 »

Polar Bear wrote:I have never used an anti convulsant medication and am very interested in how well it has helped you. It might be possible that I could consider substituting this for my sleeping medication which does not appear to have much of an effect. Hmmm... worth thinking about.


I tried a lot of anti convuslant medication inculiding Lyrica (Pregabalin), Neurotin (Gabapentin), Lamotrigin and Klonopin (Clonazepam)

Carbamazepin allowed me to sleep for day #1 without causing sedation, dizzyness etc.

In the first weeks it also help a lot wit my RLS and I was able to to reduce the opioids and then stop them for 4 complete weeks. But then more and more pain symptoms came back so I had to restart the opioids.

The real important thing is that Carbamazepine allowes me to sleep and that I need less opioids. And in general it improved my physical well being.

I am suprised that not more people try Carbamazepine and everybody goes for Lyrica and Neurotin since Carbamazepine is an old, cheap and well known drug.

Carbamazepine really turned around.

Of course it can come with side effects but every drug we take has that issue. I am lucky to have like zero side effects.

Haven't felt so good like now in many years!

ViewsAskew
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Re: My pharma diary

Post by ViewsAskew »

Carbazemine, as I understand it, has many potential side effects - more than some of the newer drugs in that class. it's usually reserved for tough cases, at least here in the US. It's absolutely unsafe for women who may get pregnant, so my guess is few doctors would want to give it to women of child bearing years unless there were few other choices. Oxycarbazepine has fewer side effects, as I understand it, but I am not a pharmacist or a doctor!
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.

QyX

Re: My pharma diary

Post by QyX »

Hi!

You are partially right. In the U.S. a genetic test is required before Carbamazepine can be prescribed. People with a specific gen variant are very likely to experience heavy side effects.

But when you compare Carbamazepine to Valproat acid or Gabapentin there is not much of a difference when it comes to potential side effect. My old school Neurologist says that Carbamazepine is still one of the best and wide used anti consultant on the market and that it does not have more or less side effects then the newer ones.

Oxacarbamazepine is very similar to Carbamazepine but can come with less side effects. And it doesn't cause the enzyme induction like Carbamazepine does. So Oxacarbamazepine doesn't alter the speed of the metabolization of drugs.

I can expect that with the FDA warning many Doctors are reluctant to prescribe Carbamazepine.

Here in Germany Carbamazepine is also used to treat mood disorders so Doctors may feel more comfortable in prescribing it.

For me Carbamazepine is a realy life saver and I can't detect any side effects at all.

It is the first anti convulsant who really works for me.

QyX

Re: My pharma diary

Post by QyX »

Safety Information regarding Carbamazepine:

The FDA informed health care professionals that dangerous or even fatal skin reactions (Stevens–Johnson syndrome and toxic epidermal necrolysis), that can be caused by carbamazepine therapy, are significantly more common in patients with a particular human leukocyte antigen (HLA) allele, HLA-B*1502. This allele occurs almost exclusively in patients with ancestry across broad areas of Asia, including South Asian Indians.[16] In Europeans a large proportion of sensitivity is associated with HLA-B58. Researchers have also identified another genetic variant, HLA-A*3101 which has been shown to be a strong predictor of both mild and severe adverse reactions to carbamazepine among Japanese[17] and Europeans.[18]


Associated birth defects[edit]
If taken during pregnancy, Carbamazepine can cause birth defects that include: cardiovascular and urinary tract anomalies, craniofacial defects such as cleft palate,[19] fingernail hypoplasia, microcephaly, developmental delays, and intrauterine growth restrictions.[20]


About Oxcarbazepine, a derivat of Carbamazepine:

Oxcarbazepine is a structural derivative of carbamazepine, with a ketone in place of the carbon–carbon double bond on the dibenzazepine ring at the 10 position (10-keto). This difference helps reduce the impact on the liver of metabolizing the drug, and also prevents the serious forms of anemia or agranulocytosis occasionally associated with carbamazepine. Aside from this reduction in side effects, it is thought to have the same mechanism as carbamazepine – sodium channel inhibition (presumed to be the main mechanism of action) – and is generally used to treat the same conditions.

Oxcarbazepine is a prodrug which is activated to eslicarbazepine in the liver.[3]


Oxcarbazapine may cause oral hormonal contraceptives to be less effective.

Increased incidences of fetal structural abnormalities and other manifestations of developmental toxicity (embryolethality, growth retardation) were observed in the offspring of animals (rats and rabbits) treated with either oxcarbazepine or its active 10-hydroxy metabolite (MHD) during pregnancy at doses similar to the maximum recommended human dose.

There are no adequate and well-controlled clinical studies of oxcarbazepine in pregnant women; however, oxcarbazepine is closely related structurally to carbamazepine, which is considered to be teratogenic in humans. Given this fact, and the results of the animal studies described, it is likely that oxcarbazepine is a human teratogen. Oxcarbazepine should be used during pregnancy only if the potential benefit justifies the potential risk to the fetus


Source: Wikipedia

QyX

Re: My pharma diary

Post by QyX »

Today I started taking Dextroamphetamine / Dexamfetamine again. I did take it in the past for ADD/ADHD.

This is also one of the reasons why I am taking it again but I also hope that it will improve my daytime tiredness and in general help me organize my life better, have more success in Med School.

Let's see if it will also improve my RLS.

badnights
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Re: My pharma diary

Post by badnights »

It seems to me that anything that helps any other problem in my body will help my WED/RLS. The WED seems to be sensitive to bodily issues, and ramps up whenever anything else goes wrong. I know some people have experienced the opposite, that their WED becomes still when they're really sick with a cold or flu, but I have not had that pleasure. Anyway, I think what I am suggesting is that the neurological, psychiatric, immunologic, etc diseases will exacerbate WED, not infections so much. Maybe.
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.

ViewsAskew
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Re: My pharma diary

Post by ViewsAskew »

Beth, your hypothesis makes sense to me. So, if inflammation is present, it could worsen it. If food intolerances/allergies are present, if vitamin deficiencies, etc.

I wonder what part of the body is responsible for being reactive like that? I'm not a doctor AND I had such crappy sleep that my brain cells barely work today :-( - I'm certainly never going to work this one out!
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

Post by badnights »

Yes. What system links all of those things... I wish I knew more about the body.
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 »

badnights wrote:Yes. What system links all of those things... I wish I knew more about the body.


Somehow everything in our body is linked to the nervous system. We have a central and a periphere nervous system.

Looks like not only there is something wrong in our nervous system. The system also seems to receive wrong signals from body cells, for example from the muscles in our legs. And then these signals also get wrongly interpreted.

The more I understand about RLS, the more I think it is a highly complex disorder, affecting many parts in our body.

This also would explain why most of us need more then one drug and also could explain why drugs stop working after some time.

This is all just very very basic. In the end you need study medicine and then spent years studying the central and periphere nervous system, together with neurobiology and neurophysiology...

These are my plans for the future.


Three days ago arrived back in Berlin. I had some stupid panic reaction to an SSRi side effect (sexual dysfunction). I decided to start taking Bupropion again and then stop the SSRi after some time but I forgot how Bupropion didn't work all the time and can totally change my brain chemistry, make me sleep all day etc. So I took Bupropion and it twisted me around for 2 days. Now I'm back on the track. Will deal with the SSRi problem later after I managed to get my life back together and developed a working working out routine.

QyX

Re: My pharma diary

Post by QyX »

So here we go again:

I had to stop the SSRi (Escitalopram). Reason: it was simply worsening my RLS and causing severe pain 24/7

All this pain made me aggressive and caused frustration. I noticed that my symptoms were worsening in the past weeks and I was sure that the Escitalopram was the reason but I was simply hoping that it will stop at some point. That didn't happen.

So I stopped Escitalopram and 24 hours later all the pain was gone. I asked my Doctor for Venlafaxine (Effexor) as a backup. I got the prescription but I won't start taking it unless symptoms of deression and anxiety come back.

At least for now I am good.

But I started taking 4 mg of Melatonin in the evening. I can slee without problems since I take Carbamazepine but the problem is that I have servere issues sleeing at night and being awake during the day. I can loose control about this very easily and then I am awake during the night and sleep during the day. This unfortunately happens to me all the time.

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