☼ erer: CT from Cymbalta and in trouble with Zyprexa, Diazepam and Valdoxan

[erer]

Yes, I agree. I think the same way and will try to taper the AP first.

I was just watching Peter Breggin and that just makes me wish I could be off those drugs ASAP. Though only a wish it is... 

[erer]

So a few days ago it was the 6 month "anniversary" of when I was CTd from Cymbalta and sleeping pills at the hospital. I just thought I'd mark it down here. 

 

I really did expect to be feeling a lot better by this time. The fact that I'm not is really hard for me to handle. I don't want to be suffering daily. I just don't want to. When I read people's stories who say they are at the 12 month mark or even at 18 months and not feeling significantly better, it just robs me from any hope and strength to keep trying. I desperately need something to get better and show me that there is at least some improvement happening and something to look froward to.

[erer]

It's been almost 7 months since I'm off Cymbalta and sleeping pills and I just cannot figure out why I'm not getting any better. I should be, but instead it seems things are even worse.

 

I've grown increasingly agoraphobic. It is getting worse and worse. I am afraid of going out, driving my car and going to any places 

a) just because and b ) because I might get a panic attack. 

 

The scary thoughts about life (all the bad things - small and huge - that can happen) have become a constant torturing companion for me and I could even say they are the most torturing part of the symptoms. I mean with the akathisia (that comes and goes, but doesn't physically get as bad as it used to be, but mentally is tormenting) and increased nausea every day for the first half of the day, the sadness and crying and depression I am still able to do things, to push through. But with the fears and agoraphobia... everything is falling apart.

[Altostrata]

erer, it sounds like you are adding to your symptoms with anxiety about your symptoms.

 

If I were you, I would take it very slowly, don't expect too much of yourself, and test your ability to handle those common activities by doing a little at a time.

 

Are you sensitive to light or noise?

[erer]

Are you sensitive to light or noise?

 

Thanks for your answer. Strangely enough I am not as sensitive to light or noise as I was when I was tapering Cymbalta. Then it was very obvious. Now I cannot tolerate loud noise, but it is not like it used to be.

[erer]

So I thought that as usually one tends to write a post when things are at their worst, then I decided to mark down the 2-3 last days that I felt some relief. I wouldn't call it a real window, more like a windowish quality - the symptoms, many of them were still with me, but being felt sort of lighter and easier; I was reminded that it can be a bit different.

 

I felt enormous gratitude that I was given the chance to experience a lighter moment. I had to wait 2 months since the last better day to get it and by today the window has shut and I am in... well, I'm feeling extremely depressed and partly mourning the way I felt yesterday. The depression today is really something. But that's not what I wanted to concentrate on. I meant to write that I had 2-3 easier days. I am grateful.

 

---

On another note. During the past 1-2 months several people (3 to be exact, including one of the site's moderators) have come out and told me straight out that I should start tapering if I want to get any better. So there's that. They say my lovely drug cocktail may be what's holding me back from getting better. Especially bearing in mind that I am taking an antipsychotic - which is basically the devil in the form of a pill - as well as the mystery drug Valdoxan.

 

I have given (I set the date more than a month ago) myself till the end of January to just sit still and see which way things are going and then to assess my situation and make a decision regarding that advice.

 

My symptoms nowadays are more mental than physical. I mostly get bouts of debilitating depression, deep sadness, crying, heartache, fear, anger, obsessive thoughts and of course the lovely agoraphobia. Akathisia still shows itself, but it has got better and better. At the moment I wouldn't consider it my biggest problem. But that's just at the moment. Could still return. But it definitely has not been as bad or even comparable to how it was in the beginning for months now. I'd even say since august. Nausea, which was a big problem a few weeks ago has lifted for now. I do feel I'm beginning to have some trouble sleeping, but hoping it will pass. 

[rapunzel2]

I'm so glad to hear from you. that you are still there. and I'm also thankful that you got to experience some relief. so sorry though, that it passed.

I'm so hoping things will get better for you!

[erer]

I'm so glad to hear from you. that you are still there. and I'm also thankful that you got to experience some relief. so sorry though, that it passed.

I'm so hoping things will get better for you!

Thanks, rapunzel2, for the kind words.

[AliG]

Erer,

 

That you got a window, of any sort , even if it only has the " quality " is a sign of healing, in my opinion.   It shows promise of what is yet to come, in your recovery. I'm glad that you felt gratitude.  I think that's key,in this process.   Acceptance , also .

 

I was also on the Valdoxan mystery drug, as you call it . I think it is a mystery why it was ever  F.D.A  approved . It acts on the melatonin and serotonin receptors in the brain . Agomelatine mimics the action of melatonin & helps to re- synchronise the body's circadian rythms. These include mood, anxiety , appetite, body temperature & sleep / wake cycles. It's supposed to improve onset & quality of sleep & this in turn is supposed to have an anti - depressant effect.  That is the theory , anyway. More a case of  " Big Pharma "  gone wild . ( in my opinion ).

 

 This was my last drug, that I'm withdrawing from . I was on it 2 years. I find it interesting that we have very similar W/D symptoms . I also find that the symptoms it was supposed to help , are the exact ones they create in withdrawal.

 

You might want to read this : http://survivingantidepressants.org/index.php?/topic/604-important-topics-about-symptoms-including-sleep-problems/

 

I hope this symptom resolves itself.  I hope you have it a little easier, than I have had in W/D.

 

Ali.

[erer]

 It acts on the melatonin and serotonin receptors in the brain . Agomelatine mimics the action of melatonin & helps to re- synchronise the body's circadian rythms. These include mood, anxiety , appetite, body temperature & sleep / wake cycles. It's supposed to improve onset & quality of sleep & this in turn is supposed to have an anti - depressant effect.  

For me, instead of synchronising the sleep pattern, it seems to do the opposite - it makes me sleepy in weird times during the day and wake up in the middle of the night. But I think waking up in the night might have more to do with olansapine messing with the blood sugar levels.

 

The cocktail of drugs I take usually still switches the lights off for me in the evening pretty well, but I'm scared to think what will happen to that effect once I start to taper.

[AliG]

Erer,

 

For me , I do believe it totally messed up my sleep , to the n'th degree , on a consistent basis, that I'm still getting over.  That is what I meant . It did the opposite !  Hopefully you will do better. How are you , now ?  I hope the symptoms are receding  and you are finding your way through this .

 

Ali

[erer]

How are you , now ?  I hope the symptoms are receding  and you are finding your way through this .

Still hanging on. The mornings and first parts of the day are still so very hard. In the mornings I think I cannot bear it, in the evenings I sometimes think there is some hope. 

All the best to you, Ali! And thank you for checking in here!

[erer]

Hey,

 

Does anyone know if it is safe to get a measles vaccination when in WD? We have a small (but potentially growing) measles outbreak in Estonia and it turns out I am not immune. I'm scared to get vaccinated, but perhaps there is no reason to be?

I am thankful for all information.

[AliG]

Hi Erer,

I'm probably way off base here, but I don't believe in vaccinations. To me , it's just more of the same.( drugs).  I recently went to Thailand, and my husband ran off to the doctor to get vaccinations, and I said ,  " what the hell " . I'll take my chances. I did not get any .  After all we have been & are going through, the thought of going and getting poison injected into my veins, is not something I want to do . Everyone here will have a different point of view, and that's ok . I think there is a thread in symptoms & self- care, that you might want to check out. Ultimately, it's up to you , however educate yourself.  Read .This is not a small thing ,in my opinion. What does you instinct tell you ?

[oskcajga]

I wouldn't personally get a vaccine considering my nervous system hypersensitivity, but maybe you don't have such a sensitive nervous system.  My body reacts to all sorts of things in profound ways, and I wouldn't dare take a chance with something like a vaccine or really any other western medical injection unless my life literally depended upon it.  But I'm an extreme case, and not everyone reacts so badly to things as myself.  There are numerous people on this website who have taken vaccines and antibioltics with no ill effects.

 

Vaccines obviously make it more difficult for you to get the measles virus in a full blown manner as your immune system will already have developed resistance to this virus.  That being said, I'd imagine your chance of getting it in the first place is pretty low.

[erer]

So I went ahead and got the vaccination on Monday. We'll see. So far so good.

[erer]

And yesterday I had my tooth done with a local anaesthetic and that went well, no immediate effects from that.

 

...which doesn't mean I'm not in a bad wave overall, but at least no immediate worsening from the vaccine or the anaesthetic. 

 

Still considering doing a trial taper of 5% olansapine soon, because it seems I am not getting any better just waiting it out. Just hoping to feel a little bit better before to have the strength. 

[brassmonkey]

Hi erer--  you're in a "bad wave" and still you were able to get vaccinated and have dental work done.  That is excellent, well done.

[erer]

Hi erer-- you're in a "bad wave" and still you were able to get vaccinated and have dental work done. That is excellent, well done.

Thanks. I can say it really wasn't easy, had to be taken to those places literally by the hand by my mum, but I got them done. Just have to keep some things going in my life for by now I have grown really agoraphobic it is a true challenge being outside my home.

[erer]

I am in great distress, just really-really awful. My thoughts have become really messed up and since yesterday I have this constant overwhelming, almost psychotic fear and strong SI. The fear is like a constant early stage of a panic attack.

 

I have been worse for the past 2 weeks but this now is something else...

 

There is one thing that we (me and my boyfriend) thought might have brought this on. For safety reasons he keeps my meds in his car, but for a couple of weeks now we have had minus degrees here (up to -25*C). Could it be that this is doing something to the drugs? We did google beforehand and found that there are no special conditions required for storing olansapine, Valdoxan and diazepam, but could it be that something still has changed in those meds due to freezing (and possibly unfreezing)? What do you think?

 

I am so desperate right now, I have not felt this bad since spring when I was CTd from Cymbalta.

[AliG]

Erer. I would look to something else. I'm not sure about your signature. Can you please put in the years. ( date.).  Unsure.  I don't think it was the temperature. This is probably " neuro- emotions". ) Experienced by just about everyone here. This is " totally normal".  Stay calm.

Ali

[erer]

Thanks to some help from someone in the forum I have now found out that the advanced patient information on Olansapine and Diazepam does say "keep from freezing". And I was very careful to read the Estonian versions of the advanced information sources and there it said there are no special conditions for storing these meds. 

 

At least now I know! Still pretty angry there was no mention of this in the information brochures available in Estonian.

[Songbird]

I just did a quick google and it says on drugs.com "keep from freezing" (also found same info on mayoclinic site and pdr.net).  No reason is given, but presumably it is rendered less effective somehow.  It is supposed to be stored at room temperature, away from heat, light and moisture.  The pdr site even says 20 to 25 degrees C.

[erer]

Doing really badly. Since the meds froze and I got new meds I have not yet started to feel better. The akathisia is worse since I got new meds. I don't know if my body had somewhat got accustomed to the way the frozen meds worked and now being back on the correct meds for a week was also a shake-up for my nervous system. Any way it is I am ready for this torture to stop now! I was already planning to start a taper at the end of January, but those plans are out of the window now. 
 

Also really shaken up about the news about Bluebalu. Somehow I hoped it would not affect me as strongly as it has.

[Songbird]

The akathisia is worse since I got new meds. I don't know if my body had somewhat got accustomed to the way the frozen meds worked and now being back on the correct meds for a week was also a shake-up for my nervous system. Any way it is I am ready for this torture to stop now! I was already planning to start a taper at the end of January, but those plans are out of the window now.

 

I think you are right, the effective drop followed by updose will have been a bit of a "shake-up".  Have you thought of trying a very small dose reduction?

[erer]

 

 

How do you mean - of all my meds?

[Songbird]

How do you mean - of all my meds?

 

No, not all!  I was thinking of the olanzapine.  It seems the most likely culprit for the increased akathisia.  Otherwise, you would just have to hold where you are and wait for things to settle down.

[erer]

 

 

 

 

How do you mean - of all my meds?

 

 

No, not all!  I was thinking of the olanzapine.  It seems the most likely culprit for the increased akathisia.  Otherwise, you would just have to hold where you are and wait for things to settle down.

 

 

I don't know, I'm afraid of making things even worse. 

[Petunia]

How long were you taking the frozen meds for erer? I'm sorry this has happened and delayed your tapering plans. Are you having akathisia all day long or do you get a break from it?

[erer]

How long were you taking the frozen meds for erer? I'm sorry this has happened and delayed your tapering plans. Are you having akathisia all day long or do you get a break from it?

 

I took the frozen meds for about 2-3 weeks. Not sure what state they were exactly at any given time, for at first it was just a few degrees minus and later it was more.

 

I would say this has set me back akathisia wise a few months - I definitely don't have a very severe case I had in the spring, but I did get 2 days of a "milder" form during the weekend that was still very hard to tolerate. 

 

Today is my 9th day back on normal meds and I would have to say it is the 1st day I feel somewhat better again. I hope I will continue to improve, only I don't know akathisia wise for it has always come in bouts for me. So could kick in at any time. But yes, today has been a bit better.

[Petunia]

Its good to hear you are starting to feel better again. I think you will continue to improve as you re-stabilize back on the normal meds. It does sound like that's what caused this wave.

 

Perhaps you would like to write about what happened in the main olanzapine tapering forum so others can be aware of these temperature requirements...Tips for tapering off Zyprexa (olanzapine) - Surviving ...

[Songbird]

So glad you are feeling better, and I hope you continue to improve.  Akathisia is truly terrible, I know.

[erer]

Perhaps you would like to write about what happened in the main olanzapine tapering forum so others can be aware of these temperature requirements...Tips for tapering off Zyprexa (olanzapine) - Surviving ...

 

Ok, I will do that.

---

 

Today worse than yesterday, but still not as bad as it was for past weeks. Hoping for stabilizing.

[erer]

Rescheduling the start of my taper that was supposed to happen in January, but due to the rough patch I had with my meds freezing I am now setting a new date - I am now planning to make a 5% cut of Olanzapine after February 15th.

[erer]

I reduced Olanzapine by 5% exactly 4 weeks ago, on February 12th. This was sort of a trial reduction to see how my body would react and to lay the ground for a possible 10% reduction. So now I am recording what I have experienced in the last 4 weeks.

 

I am comparing the WD symptoms to my baseline, which is not so easy to do, for the baseline is not a very nice place to be. So I must say in advance that it is really difficult for me to differentiate between symptoms brought about by WD and what I would have had, had I not reduced my medication. But I have tried hard to note down all the symptoms as they occurred and hopefully if I keep doing it for months to come, some clearer picture will emerge.

 

So anything distinctive I have noticed that was different from my usual symptoms is here:

 

Day 4-5: irritability

Day 5: nerve pain in my head and back

Day 6-7: more intense obsessive negative thoughts 

Day 7: extreme sleepiness

Day 8: akathisia stronger than usual

 

All throughout these days I cried quite a lot and was experiencing fear in the mornings and during the day, but these are hard to pin down as WD, because I experience both symptoms regularly anyway. 

 

What did happen during the 4 weeks was actually that I had altogether 4,5 windowish days. As a comparison, the previous month 0,5 days. Also for the past month my mornings, which were a terror so far, have become just slightly easier. Less terror and I even had 2 entire mornings without fear a few days ago (boy was that a good feeling). Something, that has been different and might be contributing to my well-being is that 1,5 months ago I turned to a homeopath and have been taking homeopathic remedies ever since. One thing that has definitely improved since is my skin condition (I have eczema).

 

For the last few weeks I have had a real uproar in the restless legs symptom, but that could be contributed to the homeopathic medicine. I do not believe it has got to do with WD.

 

Two more things have changed. Firstly, I have greatly reduced my inositol intake. I used to take 4 tbsp, now I take 0,5. At first it happened because I ran out of it, later I just never went back on the higher dose for I was not feeling worse and was thinking maybe inositol was doing more harm than good. I don't know.

 

Secondly: I am now participating in 2 mindfulness groups. I signed up for one 6-week course and started going, but then my new therapist, who also does mindfulness therapy, suggested for me to join her 8-week group that was just starting. Although it was really-really overwhelming for me at first, she did have some good arguments why I should join and now as it happens I have 2 hours of mindfulness group on Monday evenings and 2 hours on Tuesdays. Both give tons of exercises to do on a daily basis, I have no idea how to juggle those, but I will try to figure it out.

 

I am writing this post today, for this evening I plan to reduce Olanzapine again, this time 10%, which is the monthly reduction I would like to be able to stick to. Fingers crossed. I am still very anxious although the last 5% reduction went well in my opinion. Wish me luck!

[AliG]

Erer.   I'm happy for you , but can you update your Sig. It's confusing .  if you could simplify , maybe ?  It sounds like you have a good plan . I hope it works for you .