calithebold: Right at the beginning

[calithebold]

Hi

 

I have been on psych meds for 20 years and the oldest one I am still on is lithium for 14 years. I thought it was longer but then realised that is less which is good I guess. Though still a long time. I am just taking the first step in this process, which is gathering my support team around me. I have to wait to see what my psychiatrist is going to say on Tuesday but I am going in there prepared for a "no" and if that happens, I will be changing to a new psych. I'll give mine a go but I don't think she will come on board. This is all so scary. These drugs have been both, at times a support, at times a crutch but also really negative. I shake and jerk all the time, which is a huge reason as to why I want to reduce or come off my meds. I am looking forward to getting to know you .

 

Cali

[LoveandLight]

Hiya I'm quite new and not able to offer advice but hope you find what your looking for here.

[bubble]

Hello Cali and welcome to SA,

 

I very much admire your approach to tapering these psychotropic drugs. Most of us came here not in preparation but in great distress after we followed the advice (or lack thereof) of our doctors.

 

Starting with creating a support network and informing yourself is the best way to go and you have come to a great place to do that. Your attitude with respect to your doctor is also very sound. Take your time. Good planning is half of success.

 

You will find a vast amount of collective wisdom, knowldege on tapering and a lot of friendly support here. I will guide you to some threads which I think would be useful for you at this stage but feel free to browse. There is lots of information but I'm sure you will get the gist pretty soon. We will be very happy to help you with any questions you might have and share our experience with you.

 

You might start with this thread and then take it from there: http://survivingantidepressants.org/index.php?/topic/300-important-topics-in-the-tapering-forum-and-faq/

 

Thank you for filling in your drug history. What would also be helpful is if you could add at least approximate years when you started or stopped taking certain drugs. As you yoursef notice, time is quite important here. Also from looking at your signature I'm not clear about which of these drugs you are still on at the moment.

 

Once again, welcome.

 

Bubble

[Petunia]

Hi callithebold,

Welcome to Surviving Antidepressants, thank you for posting an introduction and for filling in your signature. I'm so sorry you have ended up on all those drugs and I'm not surprised you are having a lot of side effects.  Why have you been put on so many?  I put all your drugs through the interactions checker, here is the report:

 

Interactions between your selected drugs

lithium ↔ chlorpromazine

Applies to: lithium, chlorpromazine

Using lithium together with chlorproMAZINE may lead to increased side effects. Contact your doctor if you experience extreme drowsiness or dizziness, feeling like you might pass out, tremors, and uncontrolled muscle movements in your eyes, tongue, jaw, or neck. If your doctor does prescribe these medications together, you may need a dose adjustment or special test to safely use both medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

quetiapine ↔ pregabalin

Applies to: Seroquel XR (quetiapine), Lyrica (pregabalin)

Using QUEtiapine together with pregabalin may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

lamotrigine ↔ pregabalin

Applies to: Lamictal (lamotrigine), Lyrica (pregabalin)

Using lamoTRIgine together with pregabalin may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

chlorpromazine ↔ pregabalin

Applies to: chlorpromazine, Lyrica (pregabalin)

Using chlorproMAZINE together with pregabalin may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

lithium ↔ pregabalin

Applies to: lithium, Lyrica (pregabalin)

Using lithium together with pregabalin may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

quetiapine ↔ aripiprazole

Applies to: Seroquel XR (quetiapine), Abilify (aripiprazole)

Using QUEtiapine together with ARIPiprazole may increase side effects such as drowsiness, blurred vision, dry mouth, heat intolerance, flushing, decreased sweating, difficulty urinating, abdominal cramping, constipation, rapid heart beats, confusion, and memory problems. Side effects may be more likely to occur in the elderly or those with a debilitating condition. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

lamotrigine ↔ aripiprazole

Applies to: Lamictal (lamotrigine), Abilify (aripiprazole)

Using lamoTRIgine together with ARIPiprazole may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

chlorpromazine ↔ aripiprazole

Applies to: chlorpromazine, Abilify (aripiprazole)

Using chlorproMAZINE together with ARIPiprazole may increase side effects such as drowsiness, blurred vision, dry mouth, heat intolerance, flushing, decreased sweating, difficulty urinating, abdominal cramping, constipation, rapid heart beats, confusion, and memory problems. Side effects may be more likely to occur in the elderly or those with a debilitating condition. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

lithium ↔ aripiprazole

Applies to: lithium, Abilify (aripiprazole)

Before taking lithium, tell your doctor if you also use ARIPiprazole. This combination may increase the effects of ARIPiprazole. You should notify your doctor if you have symptoms such as tremor, shuffling of your feet, drooling, a mask-like face, tongue stiffness, muscle spasms or rigidity, and involuntary movements. If you take both medications together, tell your doctor if you have any of these symptoms. You may need a dose adjustment if you take both medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

chlorpromazine ↔ quetiapine

Applies to: chlorpromazine, Seroquel XR (quetiapine)

Using QUEtiapine together with chlorproMAZINE can increase the risk of an irregular heart rhythm that may be serious and potentially life-threatening, although it is a rare side effect. You may be more susceptible if you have a heart condition called congenital long QT syndrome, other cardiac diseases, conduction abnormalities, or electrolyte disturbances (for example, magnesium or potassium loss due to severe or prolonged diarrhea or vomiting). Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. You should seek immediate medical attention if you develop sudden dizziness, lightheadedness, fainting, shortness of breath, or heart palpitations during treatment with these medications, whether together or alone. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

 

MODERATE lithium ↔ quetiapine

Applies to: lithium, Seroquel XR (quetiapine)

Using QUEtiapine together with lithium can increase the risk of an irregular heart rhythm that may be serious and potentially life-threatening, although it is a rare side effect. You may be more susceptible if you have a heart condition called congenital long QT syndrome, other cardiac diseases, conduction abnormalities, or electrolyte disturbances (for example, magnesium or potassium loss due to severe or prolonged diarrhea or vomiting). Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. You should seek immediate medical attention if you develop sudden dizziness, lightheadedness, fainting, shortness of breath, or heart palpitations during treatment with these medications, whether together or alone. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

 

MODERATE chlorpromazine ↔ lamotrigine

Applies to: chlorpromazine, Lamictal (lamotrigine)

Using chlorproMAZINE together with lamoTRIgine may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

 

MODERATE

lithium ↔ lamotrigine

Applies to: lithium, Lamictal (lamotrigine)

Using lithium together with lamoTRIgine may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

MODERATE
aripiprazole ↔ pregabalin

Applies to: Abilify (aripiprazole), Lyrica (pregabalin)

Using ARIPiprazole together with pregabalin may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

(Largactil is called chlorpromazine in the US)  (Pariet is called RABEPRAZOLE in the US, its a PPI and there doesn't seem to be any interactions between it and your other drugs)

 

Your situation is well beyond my experience, so I'm not going to offer any advice, but you are very welcome here and perhaps others may be able to make some suggestions. 

 

You may wish to see Rob Purssey, MD, Brisbane, Queensland, Australia (will Skype throughout Australia)

 

I'd highly recommend reading Anatomy of an Epidemic by Robert Whitaker.

 

Please feel free to write whenever you want, you will find a lot of friendly help and support here.

 

Petu.

 

edited to add:  I just read the response Bubble wrote, she was writing the same time as I was.  I'm sorry, I just assumed that you are still on all these medications, but perhaps not.  Please would you clarify which drugs you are currently on and add dates as she requested.

Edited November 7, 2014 by Petu
added note

[calithebold]

Thanks for the welcome and whoa, information overload, there is a lot to take in.

 

Sorry to be vague but I don't know if I remember the dates, I will try and do so in my signature. I am on all these meds right now. I am worried about all the drug interactions now, though at least I know. Thank you for all your work.

 

Cali

[calithebold]

I don't remember dose changes mostly because I have spent loads of time in hospital, this year alone have had about 6 admissions, every time I see my doctor she increases or decreases something with no real tapering or increasing if I need be.

 

I really really appreciate all your comments 

 

Cali

[bubble]

Take your time. I simply refused to believe that somebody would be on 8 psychotropic drugs at the same time although we do see situations like this here. Increasing and decreasing dosages and taking so many drugs would throw even the sturdiest person off balance ;(

 

Take your time now. Maybe the most important thing at the moment is to stop changing things:  http://survivingantidepressants.org/index.php?/topic/6632-the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable/

[JanCarol]

Wow Cali, I'm so proud of you!  (folks, I know Cali, and steered her to this wonderful resource)

 

And I'm with Petu - I knew you were polypharmacy but I had NO IDEA about like, all 8 drugs! Petu is so amazing for coming up with the interactions.  (and she's not a doctor, either, just knew where to look!  Isn't it amazing that DOCTORS make stupid mistakes like this?)  Please note that the interactions are moderate, but certainly that would explain some of the shaky jerky stuff you've been experiencing.

 

As I know Cali, I feel I can say HER DOCTORS KNOW ALL of her DRUGS!!!!!  It's shocking, isn't it? 

 

BUT - as you read sig lines you will see that there are a lot of people here who have been through a lot.  A lot of wisdom, a ton of experience in here. Nearly everything I've learned has started here (and branched out as I learned about, like, Magnesium, and Niacin, and Light/Dark therapy, and benefits of lithium, etc.) And we're still working on Purssey.  AltoStrata (the owner of this site) recommends him - but I think he still may try to taper too fast, or may not recognize tardive symptoms.

 

It's your body, taper at your speed, and I agree with Petu.  Rule #1 is Keep it Stable.  Fiddling around with stuff (even supplements should be added only one at a time, in case you have a reaction to them) only shocks the system and makes it harder to heal.  And I agree with you:  support in place is first and foremost.  For the first 6 months of my taper (uneventful, mostly), I only had here, and hubby.  And my usual stuff:  exercise, sunlight.  But I had to fight to get support in this cow town.  Can you do anything with naturopathy?  Or is that too expensive for you?

 

I'm only an egg in this forum, others are much wiser and more knowledgeable than me.  If Doc #1 blows you down, we'll try again.  At least we have some ideas on where to go.  If you Skype, Dr. Purssey is available on Skype - I know you expressed that getting to his office would be difficult.  Maybe you could get a ride there for initial appointment, and then Skype after that?

 

Good luck on Tuesday!  

[JanCarol]

AND WELCOME!     

[Rhiannon]

Hi, and welcome!

 

I'm sure you're in information overload. Don't worry about that and don't rush yourself. After 20 years, with multiple admissions and on 8 meds, the greatest hazard at this point is going too fast. It's going to be very important to take this tapering process slowly, over years.

 

My goal from the start has been to be on the lowest possible doses of the fewest possible meds that I can be stable and functional and happy on. I find that approaching it that way with doctors (rather than "I want to stop taking meds") I get a lot more cooperation and support from them. Doctors really can't argue with "lowest possible dose of fewest possible meds."  So maybe that approach will help when you talk to your psych.

 

I would recommend, as you have time and as you can absorb the information, reading over the Tapering section, reading the topics "pinned" at the top and following the links listed inside those topics.

 

I also highly recommend Anatomy of an Epidemic by Robert Whitaker and Your Drug May Be Your Problem by Peter Breggin.

 

Also, I have not encountered many doctors who understand the importance of very slow tapering for someone with a decades-long history on multiple meds. They taper people too fast and then they say, well, these people just have to stay on meds because we can't taper them off, it's just not possible for some people to get off meds.

 

I don't agree that it's not possible; I am a survivor of polydrugging over decades, almost 60 years old now, and I am tapering very successfully, and I doubt that I'm some kind of huge exception to what's possible, there's nothing special about me in that way. The only difference with me is that I am going about ten times slower than any doctor would tell me to. And it's working for me.

 

I think that it just takes a very long time to undo the changes that these drugs have caused to your nervous system. It's likely your docs will suggest tapers that are just too fast to be successful. You'll have to be assertive and insist on doing it at your own rate.

 

So don't get overwhelmed, and don't hurry. Take your time. We have all the information and support here that you need to do this safely, as long as you go slowly and take breaks to allow healing time. 

 

Welcome to the forum.

[calithebold]

Hi Jan

Thanks for the welcome. Yes Jan and I have been friends for a long time now and has been my sounding board for years and someone to help when I get some harebrained idea in my head  . I didn't think you knew how many meds I actually was taking. Oh well, now you do .

 

Rhi

I am being realistic and know this is going to be years long process but as I am about to hit 40,  I would love nothing more than to know within myself that I can do this with the support. I also agree that the smallest dose of the fewest amount of meds. I will say that to my psych when I see her.

 

I will certainly have a look at the books. I will try, I struggle to concentrate a lot of the time, even with novels, which I used to love but now can't read more than several pages but getting better lately for some reason.

 

For my birthday I am getting a DSLR camera and my hands shake so bad that with my lighter camera it wobbles. My long term goal is to take photos the way I used to when I wasn't on medication, even if this is years in the future, I'd love that.

 

Should I hold every drug, even the PRN, which I have been intermittenly taking like every four days or should I take one every day for now, just to try and stablise?

 

Also, my GP, forgot to tell you this Jan, but it looks like I have developed arthritis in my ankles, knees, fingers, elbows, collarbones and hips, I am being checked for rhematoid but I think she might try and put me on something. Does anyone have an idea of what I can say to her?

 

Cali

 

Cali

[Meimeiquest]

Rheumatoid arthritis is now being seen by some as an autoimmune condition. It seems some autoimmunity is being helped by healing the gut. I have some osteoarthritis and use a supplement to take the edge off. It sounds like you need a good diagnosis and then can decide a strategy. You can always take the paper script, or whatever you use in Australia, and just say "Thank you, I'll really think about this." But how you begin to be able to even think is beyond me...you're a hero before you even start!

[calithebold]

I forgot one. Olazapine 10mg, I was taken off this last month with no taper and put on chlorpromazine 100mg.

 

Cali

[calithebold]

It might be the Olanzapine then that is giving me memory problems, dizziness, headaches and could it make my joints sore???? It's only been in the last two weeks that has started happening and I went off the 10mg Olanzapine three weeks ago and onto 100mg chlorpromazine the same day. Eeeekkkk. I couldn't even take it back again, even a bit, because my doc took all my meds off me because I was playing around with doses. I get them packed up and I pick them up from the pharmacy. My doc is very straight down the line. Looks like I will have to do that one alone, except for here.

 

Cali

[calithebold]

My story starts in 1995 when I met my first pdoc. I was really depressed, was self harming and really anxious, so she put on me on xanax. I went okay on it for a while but eventually OD'd on it. So she took me off of it and put me on aropax, which she informed me she would take off me if I did anything with it. In 1996 I had my first hospital admission, it was like cotton wool for me and I felt safe. I understood where other patients were coming from and some I just stayed away from.

 

Over the next three years I had over 75 admissions, usually lasting no more than 4-5 days. Enter pdoc 2, he and pdoc 1 worked with me to try and keep me out of hospital. After a while and DBT it did work and I finished my first degree and got a job for while. It's the year 2000 and I crash because of a bullying incident at work. Pdoc 1 puts me on effexor and in one week I am up to 445mg of it morning and night (this is the old effexor, not the effexor-XR). People were often shocked at my dose and this time I got manic within a week, get diagnosed with bipolar. Pdoc adds lithium 2 tablets a day and reduces the effexor dose.

 

Pdoc 2 comes back and changes me from effexor to avanza, no taper. Enter Melleril, now banned, I took it until I OD'd on it and it gets taken away, no taper. Then it's seroquel, 25mg tablets to start with. I take so much of the 25mg tablets that they are ineffective. Then I go on seroquel-xr 600mg at night, sudden increase. I also get put on olanzapine 5mg sometime around here. My anxiety is huge and I need a PRN, I then go on 100mg seroquel. I take so much that I OD on it twice. Jan tells me of the warnings but I don't listen.

 

I put on weight and put on weight and my mum tells me I'm fat, so I lose weight, so much that I have an eating disorder, I am very small, but think I'm really fat and need to lose more. I will not say what weight I was. Just in case anyone here has an ED and I trigger them. I even out and put on weight with the help of my dietitian but suffer from the effects of the ED for years and still do sometimes. It never ever leaves.

 

It's 2007 and I am feeling a little better and I meet my ex-husband. I put on weight and put on weight and this time am a little overweight and after a while I see this and back into the ED I go, losing an incredible amount in only five months. I am too small again. I see a dietitian and put a little on. I still feel fat. I start taking too much seroquel. 1500mg in a day, just to sleep,, I don't want to face the world, 400mg the next day, 600mg the following and then another 1500mg. It goes like this for months.

 

I am depressed. My mood stays depressed and I sit in my pdoc's office every week for 9 months crying until he puts me on pristiq, don't remember the dose. I fire him and go with private health and am admitted to a private hospital for month. Enter my current Pdoc Dr K. My pristiq dose gets doubled and I am manic in two weeks. I'm taken off of pristiq, no taper. I get put on abilify 20mg. I am now on seroquel, seroquel-xr, abilify, lithium, olazapine, plus gabapentin, pariet and crestor. Dr K adds lamictal, it's really expensive, but seems to work a bit. I am taking so much seroquel it's not funny, then she adds valium. I live in community housing in a highrise building in the city. There are social workers here and a nurse and my friend Sel says I used to wander around with sheets of valium and seroquel and I was so bombed out I couldn't walk or talk properly. Just before I move here another ED attack and lose a heap of weight after leaving my husband.I get put in hospital and forced to take three ensures a day and food on top.

 

I went off of valium cold turkey. I was on about 40mg a day. The withdrawals were huge, I was so sick but my pdoc just put me in hospital and changed all my meds around and continues to do that. I was put on saphris 10mg, but had a bad reaction, made me tired where I slept all day and had bad reflux. I went into hospital to get off it. It was tapered down to 5mg and then off and put back on olanzapine 5mg and abilify was increased to 25mg. This is while my own pdoc was away, her step in did it. My pdoc came back and changed it to 15mg abilify and 700mg seroquel-xr. Then the next week, abilify back to 20mg.

 

Every time I see her, it's another one. Last one was off of olazapine 5mg no taper and onto 100mg chlorpromazine. She wants me to stop my PRN 100mg x 3 per day dose and treats me like I am an addict. I have to do a PRN chart every week and she checks to make sure I don't take too much and I don't, it's about every 2-4 days that I take it. It looks like she could be about to be fired. The other day I broke down on the phone to Jan and said I didn't want to be on all this stuff. I jerk and shake and vision is blurry, dizzy (though that could be the lack of olanzapine). That's as much as I can remember, I probably missed a few tablets but it's hard to remember. I've had over 100 hospital admissions. I've lost count. It's time to get better.

 

Cali

[JanCarol]

Sometimes I wonder if your pdoc switches you around and bosses you around so that you stay "in her control."  I'm not saying she's a psychopath, because I think she really wants to help you.  But I think she might be a bit of a control freak, and keeping you unstable is one way of keeping you in her power.  

 

You should be righteously pissed at the callous way your pdoc rips you off one drug and puts you on another.  At least my pdoc does cross tapers when there are med changes.  Sudden changes are brutal.  And yes, there could be some olanzapine withdrawal happening.  Especially if your recent symptoms are NEW, since the last med change.  They could ALSO be side effects of Lamictal.  And Tardive effects from so much Seroquel for so long.  But you will not know for certain because the changes are complex (stop one drug, add another), and there are so many chemical pathways involved.

 

I wonder how she would feel if it were her dosages in her body that were being messed with?  I wonder if she would take ANY of those drugs?

 

The joint pain might be helped by the magnesium.  I have a lot of joint pain.  If I go to my "regular GP" she says, "You're old, just expect it." and "lose weight, you'll feel better."  But my new "Women's GP" tells me what MeiMei said:  inflammation.  And my gut is the proof.  And I seem to recall that you're not too happy with your gut, and haven't been for at least a year.

 

I'd forgotten that you were job-bullied before we met.  So I will remind you that it happened again, too, while you were married.  It's part of what started your serious overuse of Seroquel to cope.  I would call these "traumas" and you know and I know they're not the only traumas on your plate.

 

The Robert Whitaker book is the first one I read.  It is the one I was gonna recommend to your Mother, since she is part of your support team.  It blew my mind.  Totally!  And is the catalyst towards setting me free and making me take charge of my own treatment.

 

Have you been to see Sean Blackwell's "Bipolar or Waking Up" yet?  I think it will fill you with some hope, and I think you need some of that right now.  His video series is really excellent, and easy to understand when you can't read.  He understands what happens to our cognition on the meds and has designed his videos to be visual pleasing, informative, entertaining, and even funny - and definitely charming!

[calithebold]

Hi Jan

 

Well my mother is not on board like I thought, she has't looked at anything I sent her and argued with some of the stuff I mentioned to her in passing. Suddenly she is the nurse again and that's it. My physical symptoms are getting worse tonight. I don't know if I ever told you this or not but for about a year on and off I have been coughing  up bile in my sleep. Well I can't sleep and D got me glass of water though I don't remember how I ended up with it now, but I started to coughing up bile and it tastes gross. So I have no idea what it is. I have decided to just hold everything until I know what is going on for sure. I don't want to damage my body any longer, she's hurting enough already. So it's nearly midnight and I"m still up, truth is, I'm scared to sleep. Not that I think anything other than coughing will happen but my joints are sore, I hear you about the magnesium, but can't do any of that before I get more money. What I can do is look at the video series tomorrow and yes there is a lot of trauma I will have to deal with. Let's pray for an okay sleep.

 

Cali

[JanCarol]

Also I found an "orthomolecular naturopath" in Sherwood, and I may have found a "Natural GP" in Aspley (I know, that's pretty far, I still have more to learn about him).  Just say the word and I'll chase them down for you.  

[JanCarol]

I'm just offering these as options.  I reckon you will take to some more than others.  I'm focusing on videos, I find they are easier when I'm not "with it."

 

I'm also focusing on good end results - most people who go off or decrease feel better than when they were heavily medicated, even if they've had permanent damage of some kind.

 

Here's stories of people who Got Better from MindFreedom.org:  http://www.igotbetter.org/

 

And here's some stories about Recovery (and some about the hard path to get there - the one that nobody, especially your doctor - told you about):  Council for Evidence Based Psychiatry (UK)  :   http://cepuk.org/recovery-stories/

[calithebold]

MeiMei,

thanks your comment, quite a few posts back I didn't acknowledge it, I was stuck in a kind of fear mode    so yeah, sorry if I offended at all.

 

Jan,

I am grateful for every bit of advice you throw my way   I know how much research you do and I am willing to listen now where as before when I was wearing my 'sick suit' I didn't listen to anything anyone said. Hence now I find myself in this position with my pdoc's fingerprints all over my face. I will look at some more than others. I'll let you know when I do.

 

I feel okay this morning. Last night was awful.  I felt so sick and D was so worried. I got really badly shaky hands and my body was trembling. I was a little scared when the bile started but for some reason it stopped and I went to sleep around midnight (I'm more of 8:30pm person) so this is very unusual for me. Oh my gosh, how do you all do this day after day. It makes the idea of what ahead for me all the more daunting but also more determined to start and I already have, not literally tapering but generally in my mind. I feel a lot stronger. I am so angry with my pdoc. I'm really not looking forward seeing her on Tuesday. I will give her a chance. I realised that I probably underestimated the withdrawals to come and I am so so sensitive with drugs, even a slight change and I'm manic or depressed by the end of the week. This will be five or more years with all this stuff. I'm willing to reduce though to start with, love to get off of all of it. But that's way ahead of myself. 

 

Cali

[mammaP]

Hi Cali, welcome from me too. It is horrific what doctors do to people with the drugs they give out.

Don't be too scared, as everyone else has said, keep it stable. You've had a lot of recent changes so 

keeping things stable for a while to let your nervous system settle down is very important. You will 

not have to wait until you are off all the meds to feel better, it should happen as you get down to lower

doses.  I have arthritis and can say with absolute certainty that meds caused me a great deal of pain. 

I can also sympathise with the bile, that was also down to the meds but also a very unhealthy diet  .

 

Take good care of yourself while you are doing this, eat as healthily as possible, take gentle exercise

and lots of water. If you do very tiny cuts you may not be affected too badly.  

I'm glad Jan led you here, and hope that you can take in some of the material here. It can be difficult 

to take it all in but as your head starts to clear you will be able to process it better.

 

I hope that your psych will be on board and supportive of slow tapers, many aren't but yours

seems exceptionally over the top and will possibly just tell you that you can stop some of the drugs 

cold turkey then refuse to prescribe any more! I hope I am wrong because you need to get those scripts

filled in order to taper slowly. 

 

I hope the appointment goes ok, keep us posted wont you?

[calithebold]

Hi mammaP, I will admit to a poor diet at the moment. It's something I need address.

 

I actually stupidly went on a diet several weeks ago and with my history of diets not turning out so well, it's a little frightening (yes, Jan you were right, I shouldn't have done it) The last thing my body needs right now is an attack on it from me. I said last night to D that I need to increase my calorie intake and as of today I will. No more treating my body like a dumping ground. It needs to heal so desperately.

 

One good thing that has happened is that I cut my artificial sweetener intake from 4 to 3 to 2 sachets in my tea and I'm planning on switch to raw sugar eventually. Drinking a good amount of water for me. Which is good. At t he beginning of the year I got off of all diet cola drinks altogether after years of consuming huge amounts, nearly 2 litres a day. Which is a lot. So I am very happy with that.

 

I want to hold on right now with all meds and not touch anything for a while. My poor body needs some stability.

 

Cali

[Altostrata]

Welcome, cali.

 

Yes, minimizing those food chemicals like those in artificial sweetener might improve your health. I suggest tapering what you put into tea, get down to a small amount, and switch to a natural sweetener like honey or agave instead. But in general, minimize sugar entirely.

[calithebold]

Hi Altostrata, I will take your advice re: honey, I would be willing to switch on my next switch. I've been finding I can do one switch a week on sweeteners without the need to have more again. We'll see. If I find I can't cope, I can always go back on it. I'm finding the sweetener too sweet at the moment, so it's the perfect time to make those changes.

 

Just woke up from sleep, without extra meds to make me sleep which is what I was doing and want to make sure I don't do as it stuffs me around. I'm still all foggy but not slurring. Eyesight is crap, I have to put my glasses on and then things are still blurry. I'm hungry, which is good, I am happy with myself there. Didn't stuff around with my food so much as to take my hunger away yet. I am excited about this process, even the fact that I need to hold right now, it will be so nice not to change something. It alternates between anger and feeling helpless in a way about seeing D K. I don't trust her. I am worried she will try and hospitalise me for being non-compliant. Though I know too that she can't because i am not a danger to myself or others. I'm just pissed off. Hell, can't I be pissed off at her! Yes I can. I'll still take this to her, I won't completely rule her out until I talk to her but I'm not holding my breath.

[JanCarol]

It's pretty sad when you feel you need to take a lawyer to see your doctor!     Breathe, "Keep calm" and think of Dr. Breggin's soothing voice while you are in there (watch a vid by him if you haven't yet!)

 

While Alto says that sugar is bad, our Aussie raw sugar is cheap, plentiful, and has some(tiny) vitamins and minerals in it.  Not as good as health food shop stuff like rapadura or agave.

 

I learned that I have a honey sensitivity :-( so sugar is better for me than honey.  I know how you feel about diet & stuff, so I know you will use in moderation.

 

If you use honey, make sure to use raw, local honey, it's chockers full of enzymes and even has a slight antibiotic effect (real honey does not mold!).  It's available at most fruit & veg shops here, & sometimes you can even choose which blossom the honey was made from to get a variety of flavor (I prefer a darker honey from wildflowers and trees).

 

Another diet tip that I'm fond of is pink himalayan salt.  It gives you micro minerals to help your neurotransmitters cascade.  You can get it powdered (for a salt shaker) or grains for a grinder.  It is soooooo tasty that I don't like regular salt!  It's got a nice salty flavor, but it lower sodium than regular salt.  The nice thing about salt is if you crave it, you probably need it, and the reverse is true, if you don't want it you probably don't need it.

[calithebold]

Thanks Jan, your advice means a lot to me and I will take it

[calithebold]

Weak arms, hands, deep in the bones. Fingers tingling. Light flashes in front on my eyes. Almost painful to look in the light. My bones are heavy. Headache. Cuddle cat but get caught with her on my lap. Pain. Cuddling cat but can't feel arms, feet, hands. Lay down. Awkward. Cat wants to smooch, want to sleep, feel bad. I'm so useless, can't even cuddle cat. I try until the pain is too much. Worried. This is just the start. Sigh.

[Meimeiquest]

I would take this as a valuable lesson on not going off any drug quickly. Most of the time that does not have to be done, and the withdrawal is not that painful. Even if it takes ten years, it will be a good decade with increasing cognitive abilities and lots of learning experiences. Much better than a decade drugged. Speaking more to myself than you

[calithebold]

Thankfully it has passed for now. I'm excited about the start and just holding for a while to stop the endless changing of drugs. My arms still feel a bit weak but it's nice to break through for a bit. This may be just the start, but it won't be all bad, maybe I might even get a reduction in the embarrassing jerking and shaking that my body does wouldn't that be awesome

[JanCarol]

Yar, you also have the suggestibility problem.  You know, the med student who reads about diseases and decides he has every one of them?  That's why I'd be careful reading peoples' threads.  I'd go to any thread that is recommended for you here, on your own thread, and maybe around the coping skills & strategies stuff, and if you still have energy, recovery success stories.

 

On the one hand it's encouraging, OMG, someone ELSE has that TOO! But after awhile, your brain - seeking ways to manifest it's pain - will make trouble in new ways.

 

My own journey has been simple and EASY compared to most of the people in here!   And Alto - when Alto speaks, Listen!

 

Sounds like you are doing an aspartame taper, first!  :-D  (and that, all by itself, may have huge benefits!)

[calithebold]

I'm excited. I'm seeing my psychiatrist today. After what I've said that may sound weird but I saw my case worker yesterday and told her about this all and she was nothing but supportive and thinks Dr. K will be too. She said that Dr K will go in the direction that you are asking for and I will admit to asking for drugs or saying "I'm suicidal" or "I'm manic, I just spend $1000" (there were a few of those) so I think that is why so many drug changes were made because of my 'feelings' but she did go way overboard and got me in a situation, for patient, that I shouldn't now be in. S. thinks because we have a new direction and goal that Dr K will be nothing but supportive too.

 

So far today I am okay. Looking forward to putting that camera on lay-by today. I woke up thinking about it and I'm all excited. It will remind me of my goal. No shaking! I am noticing the drop in sweetness today in my tea. I accidentally put three equals in there yesterday afternoon and now I'm like, whoa, not sweet enough. That stuff is evil. Then I have to think about other things like my sugar free hot chocolate. Really! What was I thinking.  Luckily I don't have really any other things that are sugar free. I used to but since I went off the diet cola, not really. I made an acknowledgement to my partner D last night that he would be going through some things too. What with me complaining (I complain a lot) I'm annoying like that, but I wanted to acknowledge that while I am complaining he doesn't say a word, he just listens and hugs me. He is a gem. I guess that's why I love him so much. But he was grateful for the acknowledgement anyway. I'm going to try extra hard to minimise the complaining today

 

I will let you all know how I go with Dr K this afternoon.

[JanCarol]

Bated breath!  How did it go with the Dragon Doctor?  (sorry, that's how *I* think of her, you can choose your own adjectives!).  Thinking of you.

 

I'd like to see/hear some more about what drives your "manic" spending or non-sleeping.

 

You know that Seroquel lowers your impulse control, makes it harder for you to resist an impulse.  But there is personality involved, too.

 

You will hear a lot (in here) that it pays to wait before complaining to Doctor about all things.  But then, you've been trained and conditioned to be a "compliant patient" and report all things accurately (except when you get sneaky and WANT to do something really really badly!) - so it's got to be a balance.  A fine line to walk between - is this dangerous?  Is this hurting myself or others?  - and - the need to please your doctor and report so that she will intervene......

 

Now that I know about withdrawal - unless my spending or sleeplessness is out of control - I will likely not report for up to 3 months of trouble now.  And I've noticed that MOST things pass within that time.  It may be different for you.

 

Also - saying you are "manic" is medicalizing what may be normal life problems (as Dr. Breggin would say!).  What other words can you use to describe what happens when you get "manic" ? 

 

Waiting to hear - either here or in "the real world."  <3

[calithebold]

Well it went amazingly. She was fine, even happy with the plan. I told her that I wanted to hold with everything and she agreed. The only thing we sort of didn't agree with was the seroquel 100mg PRN dose, she wanted that to be available if I needed it where I said I wanted everything to be stable and have the 100mg as a lunchtime dose. In the end she said I could take one at lunchtime but leave the possibility of having more if I needed it. I won't do that but will have it at lunchtime every day.

 

I told her I would go back to DBT and work on some of the stuff that has pushed me to ask for these drugs and I have. I've had an 'emotion' and instead of dealing with it I've pushed it under the rug and took the quick fix. In the end Dr K said it was the best news she'd heard all day and I'm really relieved. We have agreed that we will hold until 6 January and then see how I am and then she wants to start with the largactil/chlorpromazine and I'm happy with that because living in Queensland in Australia, my skin is burning and I've only been on it for four weeks. The tan line on my feet is so prominent and my feet are sore because I didn't think of putting sunscreen on them. 

 

I'm so happy. I was not expecting to have this all happen. I have a lot to work on but I'm excited so much all the same.

[calithebold]

I was wondering, not for now but for when I look at the first taper on 6 January, which would you do first? Would you do the largactil/chlorpromazine or would it be something else? Is it last goes first? Also, I have bought some magnesium and I was wondering how much to start taking or if I can even start them now? I just ordered them from the US on the weekend, so might be here maybe tomorrow or Monday (public holiday here for G20 on Friday). Talking about G20, it is being held in my suburb, can anyone suggest anything I can do to help with anxiety of the G20. I don't know what to expect. I was going to do some distraction with my list of things I can do when I feel awful. I'm scared because D is going to go out in it. I don't want him to. I think since he's seen the news he won't go anywhere near where protestors and G20 are but still eekkkk! I'm putting myself in lock down from this morning. I need to get some more seroquel and my next pack of tablets. Then I'll be housebound for 4 days. I'm so going to be happy next Monday.

[calithebold]

This morning my skin feels like it's burning, even under my clothes. I feel like I am sunburnt all over

[JanCarol]

Oh dear, I forgot about the sun and chlorpromazine.  And my exposure to it was in the northern hemisphere where that was less of an issue.

 

Do you think the burning feeling could be an interaction *between* drugs, too?  

 

I wish I could help you with the G20.  I'm afraid that folks outside of our town have no idea what our little city is going through with that thing.  Everybody is talking about it.  I haven't seen the news you are talking about but I keep hearing about stuff "on the street."  I'm glad my friends are all out of the police force.   I wish it were easy to just go stay with your Mom or Dad during that time.  And I can see that D is curious to "see what is going on."  I'm sure he'll be safe, but I wouldn't do it myself!  

 

Have you ever done EFT?  There are some people in here who say that it really helps them.  It brings you into the present moment with gentle tapping motions and adds an affirmation to "reprogram" your anxieties.  I have a "professional EFT instructor" in my neighborhood but I haven't done anything other than YouTube EFT (and there is a lot out there).  Look at "Tap of the Morning," but that's not the only YouTube video about it.  I think EFT stands for Emotional Freedom Technique, which sounds like something you could use!

 

In my ignorant opinion (I am only an egg), you can start the magnesium anytime and it will help you.  Try 1/2 tablet at night for a week, and if you don't react, you can go up to a full one.  (folks, she's got 400mg glycinate).  Who knows, maybe it will "cool you down."  Maybe after a month of that, you can add a 1/2 or full one in the morning?

 

And keep an eye out for "high quality fish oil."  My doc took me off of fish oil, it's not compatible with my chemistry (I'm on flax and hemp seed and Evening Primrose and krill - geez - but I will eventually only be on Evening Primrose and hemp seed)  Again, try just one, maybe in morning, to see how it goes.  Have you tried fish oil before?  Does it work okay with your hiatal hernia?  There are odorless ones, even raspberry flavored syrups you can take.  Not right away, but maybe once you've stabilised onto one magnesium at night.

 

And cheers to sunscreen!  I hope you feel better tomorrow!