My pharma diary

[ViewsAskew]

It just isn't easy, is it?

[QyX]

It just isn't easy, is it?

I more and more start to think that WED/RLS is the devil. You get your hopes up to some point but the next crash can happen any moment. And then you crash again.

[Polar Bear]

.... And again.... whhooops. ... crash !!!

However, what do we do, we get on with it, always hoping, and walking those damn floors.... unending... I am so fed up of only getting to sleep at around 5am.
And Yet, others may not have slept at all and will think I am lucky to have had shut eye at 5am.

[ViewsAskew]

It just isn't easy, is it?

I more and more start to think that WED/RLS is the devil. You get your hopes up to some point but the next crash can happen any moment. And then you crash again.

Yup - I crashed again just this week. Sigh.

[QyX]

Oh, what happened?

[ViewsAskew]

I think it's perimenopause. I had a few months with no issues. But last month, about 6-8 days before my period, everything went CRAZY. After my period, it was OK again. This month, same thing. Drugs don't work right during this time. I've tried adding other stuff, but it just doesn't work.

Last night I was soooooooo tired. I sat on the couch and had a mini meltdown. I had meetings and commitments all week that I couldn't get out of, I hadn't slept well, the symptoms wouldn't stop. All I wanted, more than anything, was to be *normal*.

[Joanie60]

Oh Ann, I feel ya!! Although I am VERY lucky, meds allow me to sleep at night, I have symptoms up and down all day (meds help, then stop helping, then wait for next dose, then relief, then they wear off, then next dose, well, you get it). I wonder, frequently, what it would be like to have an entire day symptom free. Then I tell my brain to knock it off.

You guys remind me how lucky I am to sleep, at least 3/4 of the nights. But I think it is the roller coaster all of you have described that gets to me. This disease is so damn unpredictable. You think you have the right "cocktail", it works for a moment, then it stops. Or symptoms wax and wane for no apparent reason. And my logical mind wants logical answers. I work on trying to accept the vagaries of WED but mostly I am unsuccessful, hence frustrated!!

I am trying to fight through a spell right now without morning meds to see if it goes away on its own. Why? I don't know. An exercise in more frustration I guess hahahahahah

But at least we are in this together!! Peace out everyone, try to have a good weekend

Joanie

[ViewsAskew]

That roller coaster effect really is the worst. It's a lot easier to accept and deal with things that happen regularly. You plant for them, you change your life. When they happen the way they do to us, it's almost impossible to identify a process of method of dealing with them.

Joanie, hope that exercise in frustration is as frustrating as you want it to be .

[QyX]

Looks like Carbamazepine lost its positive effects on sleep. I developed massive sleeping disorders, ... again!

At the moment I don't know what I can do. I can take Abilify for some days but within 2 weeks I develop problematic side effects which force me to withdraw. I took Abilify two times in the past 3 three days but as I know from the past this drug definately is no solution for me.
'
So I am desperate ... again! And for the moment my Doctor hasn't any suggestion either ... simply because I already have tried so many many drugs.

Next night I am gonna try Doxepin again, some old tricyclic antidepressent at a low dose. It is well known for its positive effects on severe chronic insomina. It didn't really help in the past and tricyclic antidepressent are known to worsen RLS. My hope is that Carbamazepine will prevent and protect me from negative effects on my RLS. I know it is unliekly that it will work but at least I will get some more data about how my system works.

Maybe one day I am lucky.

The Carbamazepine though still seems worth taking it because my mood is stabalized. I didn't relapse into a depressive moond since I stopped Escitalopram.

[ViewsAskew]

It seems this happens to a lot of us. We have to cycle through things. Very frustrating.

[QyX]

Today I spoke with my Doctor. Here is how we procede:

I am going to increase Melatonin, up 10 mg per day. It really seems to help up to a point. Maybe it get's better when I raise the dose.

But of course it won't be enough for now.

So this is what we do: low dose Olzapine (Zyprexa), 1,25 mg to 2,5 mg should be way enough to make sleep.

The problem just is: in the past in made me depressive and caused hypersomnia. This we hope that Carbamazepine protects me from this effect but who knows? CBZ is also a potent mood stabalizer and it helps a lot to keep my mood stable in the past months but who knows which damage Olanzapin will do.

So we have a 2nd option when Olanzapine fails.

I am going to take Clozapine (Leponex) then. YES, Clozapin comes with nasty side effects. So I will have to make a blood check every week in the next 18 weeks when I start taking Clozapine and after that 18 week perioid I have to go every 4 weeks.

Also Clozapin comes with more risky kardiovascular riks then regular atypical Antipsychotics BUT

Clozapin has this unique receptor profile so that people with neurological movement disorders can take it, despite its antihistaminergic properties.

It is well known for a messure of last ressort in severe sleeping disorders who don't respond to normal treatment.

Yes, it seems messed up to take a drug like Clozapine but when you can't sleep? What choice do you have?

Not being able to sleep makes ANY life impossible. If I finally get my life back ... then it will be worth it.

Doctors will scream when they see a "healthy" youg men like me taking Clozapin and potent opioids (Hydromorphon / Morphin) but which choice do I have?

I tried like 55 drugs now.

Here we finally go with Clozapin.

[ViewsAskew]

I do hope it works for you. I can't imagine how frustrating this must be.

[QyX]

I do hope it works for you. I can't imagine how frustrating this must be.

Well, now I am getting most brutal and special hammer available. If this won't help ... then I will just resign from having WED/RLS...

Prescription is on its way. Hope the small pharmacy around the corner will be able to fill it within the day.

I could go to a bigger one but most of the time I am to lazy to do that.

[Polar Bear]

Good luck with this.

[QyX]

So I haven't written in a while. The reason was simple: I somehow "forgot" about my RLS/WED issues ... sleeping is no longer an issue. For the time being I feel remarkably well. Maybe for the first time ever I feel like I am healthy.

It all started when I added Carbamazepine to the opioids. Back then I was taking Morphine. With Carbamazepine added it became very easy to sleep but I was low on energy, still anxious and depressed. We added Escitalopram. Depression disappeared but the SSRi caused WED/RLS symptoms after some weeks. I had to withdraw but luckily my mood stayed stable, at least for a while. I was able to sleep but sleep was still something unstable and after some weeks falling asleeping problems and depressive symptoms came back. I wanted to start Escitalopram again but it caused WED/RLS symptoms instantly. I had Venlafaxin (Effexor) as a backup. I started with 37,5 mg which helped almost instantly.

But more important then this I figured out that Carabamzepine was still an important factor for sleep. I had planned to switch from Morphine back to Hydromorphone (less side effects, works longer). Honestly, I didn't expect so much from the switch back to Hydromorphone but surprisingly my sleep improved a lot. Morphine has made it difficult to fall asleep which is strange because when I had switched from Hydromorphon to Morphine about 8 months ago the sedating properties of Morphine made it very easy for me to sleep, at least in the first 4 weeks but this effects disappeared quick which was the reason to add Carbamazepine.

But wow, I switched back to Hydromorphone and for the first time I ever since a very long long time I felt that I was sleeping in a way which a human being is supposed to sleep when he wants to be active, do sports, work, go to the University ...

I also started going to the gym 3-4 times per week. The beginning was hard and it made my RLS/WED go crazy. On some days I took up to 20 mg Hydromorphone but I managed. I wasn't 24/7 RLS/WED symptoms free but with more Carbamazepine and Hydromorphone I was able to find quality sleep most of the times. On some nights it was also very helpful to take low doses Dextroamphetamine (2,5 mg). It had effects like a DA if the dose was low. Too much of course will kill your sleep completely.

Yes, things were really improving. For the first time ever I was awake during the morning without an alarm clock and able to sleep during the night.

Oh, and I started taking Melatonin, 5 mg time released pills. I don't know how much they really do for me but most of the time I am pretty convinced that they do a lot for me ... it also happens a lot that I fall asleep without taking them and then I take them later if I wake up at some point during the night.

Still always I had some mild RLS/WED symptoms and I am often low on energy because until university starts in October I won't have a social life. I enjoy sleeping a lot and it became easy to stay up late and sleep till afternoon. Also exercising has a huge physical impact on me which increases the need to sleep a lot.

I also discovered that the time I need to fall asleep and the time I sleep has a lot to do with the amount of Carbamazepine I take. It really seems to be key factor in all this. Right now I take something between 1.200 and 1.600 ... which is a lot.

Normally you are supposed to split the dose in two halfs, like 600 in the morning and 600 in the evening. But this is not the way it works for me. I did this in the beginning when I was taking lower doses, like 200 in the morning and 400 in the evening because I needed it to manage my RLS/WED in the morning. Morphine alone wasn't enough but since I started taking so much I take 1/3 of the dose early evening and the rest 30-60 minutes before I go to bed.

This is really not the way you are supposed to take Carabamzepine but there are no studies how Carbamazepine should be dosed and taken when taken for RLS/WED. I experimented on my own and the say 1.600 mg is really the maximum you can take. Normally doses of 800 mg are not exceeded because people will quicky develop side effects like double vision ... but until now I have like zero side effects from Carbamazepine. Really seems to be the magic drug for me.

Couple of days ago I stopped Venalafaxine. It comes with some sexual side effects I don't like and since my dose is so low and it works so fast I can just stop/start the drug when needed. I am also very optimistic that exercising and social life will make an antidepressent needless.

My last discovery is that it really makes quite a difference if I take 1.200 mg or 1.600 mg of Carabamazepine. I feel well with both doses but when I take 1.600 mg Carbamazepine I just don't want to get out of bed and I manage to fall asleep again and again. Something I just like to much. When I was at the gym the day before I can manage it to sleep up 20 hours! This is just way to much. With 1.200 mg I sleep something like 7-8 hours but I need some discipline to time everything right, something I sometimes lack of but it will become easier when school starts.

And ya, since 3 or 4 days I started to feel remarkably well, physical and psychological and even sleeping long wasn't able to ruin.

I have to say: I never ever thought that I will become so well. I was so desperate for so many months and years, I had to suffer so much physical and mental pain and now it seems to be gone...

My expectation always was that falling asleep and RLS/WED symptoms will just stay an every day battle which is sometimes easier and sometimes harder to win but now there is no battle at all. I am 29 years old and just right now I feel physical and mental well in a way I have never felt before. My legs are warm and relaxed, my body feels strong and warm, my mind is active and I am about to go the gym.

Okay, I sometimes I am sad, too. Like when thoughts come up how I would have developed when I would have felt like this 10-15 years ago? My lastet calculation says that I have lived at least 15 years in a depressive, anxious, sleep disturbed and physical bad shape.

I am quite active in the medical community, I am going to medical school myself and I have some thoughts about writing a blog (in German) about my experiences with RLS/WED, the doctors, these estimated 20 wrong psychiatric diagnoses, the (side) effects of the estimated 55 different drugs I have been prescribed ... all this nice little stories to create awareness and attention for RLS/WED in Germany.

I don't know if I am really gonna do it because it would become quite personal. There is simply no other way to tell this story. And I don't want to become the guy on Campus who everybody knows he is the RLS guy. I don't enjoy this kind of popularity. I had this once when I did a lot of self help work in the bipolar disorder community and I don't know if I want to handle this again because when I do it there is only just one way it can go ...