CAFFEE60: I am looking for help with tapering off quetiapine.

[CAFFEE60]

I am looking forward to hearing from everyone who is or has gone down the road I am on. I have bipolar disorder. I was on lithium until about five years ago when it was discovered that I had 50% kidney function. I was put on quetiapine but have developed unbearable side effects. I have muscle spasms, drooling, swollen tongue, and my granddaughter started copying me clicking my mouth. I have had terrible constipation for a while but thought it was due to my diet and lifestyle until I sarted researching antipsychotic meds. This part is embarrassing but I did not know I was on an antipsychotic. I assumed it was an anti-convulsant. It just never dawned on me that my psych doc would put me on an antipsychotic. Now that I have done my research I am scared and confused. My psych doc  suggested I try Tegretol after going off quetiapine. She wants me to go off quetiapine completely first to see what the "baseline" is as far as the side effects go. Now that I looked into the side effects I am afraid of all of these drugs. I am also afraid of not being medicated. I have been a compliant patient until now. Now I am just lost.

[nz11]

Welcome Caffee

You are not alone.

[Likewise]

I think it would be important to know about your diet and lifestyle (per your posting) before offering advice.

[KarenB]

Welcome Caffee60,

 

I'm not surprised to hear you are feeling scared and lost - you've been put into a very difficult position and been given very little help.  I'm glad you've found this site for some help - you are very welcome here.

 

I'm not familiar with bipolar, so I'll leave it to others to comment on that, but I do want to point out that getting off Quetiapine won't give your doctor an accurate 'base-line' because the data will be muddled by w/d symptoms. 

 

How fast have you been tapering?  It's really helpful if you put dates and dosages in your signature so we can help you better.  The best way to taper is slowly and gently.  We recommend tapering by no more than 10% of your current dose each 4-6 weeks.  This gives your central nervous system a chance to stabilise as you go, and lessens any withdrawal symptoms. 

 

Here is the link for tapering quetiapine:  http://survivingantidepressants.org/index.php?/topic/1707-tips-for-tapering-off-seroquel-quetiapine/

 

I can see you are aware of the need to get clear about how you will manage without meds.  How did you get labeled bipolar in the first instance?  If it was after you used other antidepressants then you may not be bipolar at all.  It is a very common misdiagnosis in that situation, as withdrawal symptoms are mistaken for bipolar symptoms.     

 

You might also like to have a read in the symptoms and self-care forum to find things that will help ease your way through this.  Then you can come back to this thread, which will be your journal, to ask any more questions and fill in those signature details.

 

Best wishes,

KarenB

[CAFFEE60]

I have been tapering off by 10% every two weeks but I see in these posts that I may be going too fast. I was diagnosed with bipolar after a serious bout of strep throat and coming off MAOI antidepressants. It had been a very stressful year with a marriage unraveling due to emotional abuse that I was had been in denial of. I am seeing a naturopath to help with the detox and she gave me magnesium and passionflower. The magnesium has helped somewhat with the constipation. The passionflower is suppose to help keep me calm. I will slow down my withdrawal from the quetiapine.

[KarenB]

Yes, that is quite fast - though you had done very well to go slower than most doctors' suggestions.  Depending on how much you are feeling your w/d symptoms at the moment, you may like to hold at this point for longer than a month before continuing on with the taper. 

 

It does sound as though you may have been misdiagnosed with bipolar.  What are your thoughts on that?  There are people on this site who have been similarly wrongly diagnosed, and also those who have resisted such a diagnoses.  You can read here for some discussion:  http://survivingantidepressants.org/index.php?/topic/7503-bipolar-panic-attack-depression-mania-or-drug-effects/

 

Magnesium is great.  You can also take fish oil, which many people find useful in w/d.

 

All this medical misadventure happened for you at a very stressful time in your life.  I think that if you find the right support, and give yourself the self-care that you deserve, you will come out the other side of this just fine. 

 

Go gently,

KarenB

[CAFFEE60]

Thanks. I will definitely try to slow down the tapering to make changes once a month or even farther apart. This is a wonderful place. I am all alone in this journey so getting support here is very reassuring.

[nz11]

I think it would be important to know about your diet and lifestyle (per your posting) before offering advice.

 

This post has been bugging me so i wanted to reply to it .

 

To investigate diet and lifestyle in the face of serious iatrogenic manifestations is like investigating the sinking of the  titianic by asking the captain how the deck chairs were arranged.

 

Perhaps for a virgin brain then yes it has relevance but in this situation it becomes a moot point.

 

It is far more appropriate  to enquire as Karen has on taper speed.

 

And consider what is well documented side effects....that people have not been warned of.

 

Karen also got it spot on by squeezing out the fact that ad withdrawal (is for vast  numbers  and in this case) has been the gateway to erroneous labelling.

 

This part is embarrassing but I did not know I was on an antipsychotic.

ok i was just as ignorant. So you are not alone.

She wants me to go off quetiapine completely first to see what the "baseline" is as far as the side effects go.

I suppose by cold turkey right...?

Have you considered getting a new doctor.

 

 

Well done on being 1 year free of clonazepam.

 

If you follow the 10% rule in the link from Karen you will have no problem getting drug free.

 

Welcome Caffee.

So glad you found sa.

Keep us updated.

[ChessieCat]

Hi Caffee

 

Welcome to SA.  You'll get plenty of support and encouragement in this place.  Good luck with your tapering.

 

NZ - I just love some of the comments you make.  This one was a gem "investigating the sinking of the  titanic by asking the captain how the deck chairs were arranged".

 

CC

[CAFFEE60]

I am finally done with the quetiapine. I used a compounded prescription for the last month and a half. The wd symptoms were bad during my taper but that seems mild now. I was having serious constipation but now the laxatives aren't working. The tingling in my feet is unbearable. I am trying to change the channel but am finding it more and more difficult. My tongue is swollen. I can't poo, eat, talk, or exercise. I am under the care of a naturopath and she is helping me with herbals and acupuncture. Discouraged because I welcome the mental clarity but not the pain. 

[CAFFEE60]

I would like to add that one of the most difficult aspects to deal with during this hellish withdrawal is the emotional, social and physical isolation. I have been afraid of telling anyone about what is happening to me. The only people who know are my psychiatrist, my naturopath, my osteopath and my massage therapist. Each time I go to another therapist I have to deal with my fear.

 

For several years as my symptoms were developing I have seen many specialists. They all covered up the possible connection of my health to the medication (if I can call it that). I think of it now more as a poison. I have seen a hematologist for blood issues, a neurologist for the tingling in my feet who did a nerve conduction test (normal), a gastroenterologist who did a colonoscopy for constipation (normal), a nephrologist for kidney problems (50% function due to lithium), my dentist who consulted an expert who told her it must be the drugs that are causing my tongue issues, and a few more. Finally this year they were forced to admit the meds might be the culprit when my blood tests came back with a notation stating that my abnormal results may be due to medication. Somewhere in the system (Canada) they have decided that the truth had to be mentioned. I assume this is not for my benefit. It is probably to prevent me suing someone.

 

I have learned how to be a compliant patient but this new phase is more difficult to navigate. My hematologist admitted the meds may be causing problems but advised me stick with them. When I told my gastroenterologist that my psychiatrist told me to taper off the meds she didn't believe me and suggested I stay on them. I am afraid my family would assume that I am about to go mad. I don't blame them. They have been brainwashed just as I was. I was proud to be a good patient. But the silence I have self imposed is killing me. As my ability to experience normal emotions emerges I have no one to express myself to except the dog. I am angry, fearful, sad, and glad to be drug free. I fear my symptoms my never go away and may develop into drug induced parkinsons. How do I begin to tell my family about this?

[scallywag]

You would probably be surprised how many people you know are on these medications. The pharma companies make money, it only follows that there are lots of people buying their products.

 

I tend to tell people after I get to know them a little and have been astounded at the number of people who are or have been on them.  Some are interested in what I'm doing; most are content to continue with their prescriptions. I'm okay with that. I tell them because it's about me not about trying to convince them.

[CAFFEE60]

I took my last dose of Quetiapine Oct.5/16. My symptoms were bad during the taper but nothing compared to right now. My whole body is stiff. I almost fell backwards down an escalator. The trembling and inner restlessness are unbearable. I can't eat. My stomach is like a rock. I am totally dependent on laxatives. And they have a hard time working. Dehydrated. Nothing helps.

 

Symptoms seem to be getting worse. I don't know if I'm just running out of energy to deal with them. Have had to become more housebound. I can't deal with or play with my two grandchildren. I am so worried that this is permanent. I fear my age is against me. 64. I am afraid to tell my family. They are brainwashed. I am afraid to complain too much to anyone. I am trying to hang onto hope.

Edited November 27, 2016 by scallywag
moved

[scallywag]

Caffee are you willing to consider reinstating a low dose of quetiapine? Please read the discussion, particularly the first few posts, at this link:
About reinstating and stabilizing to reduce withdrawal symptoms

Please do not reinstate your previous dose, just let us know if you wold like to test it to see if you get relief. In the last 7 weeks, your CNS (central nervous system) has been adjusting to the absence of quetiapine and taking the same amount as your last dose may destabilize you/cause problems.

 

I have found a few things that relieve digestive issues, including constipation: coconut oil, probiotic supplements and Vitamin C. This is my order of preference, starting with the most gentle approach. (all are more gentle than commercial laxative products)

• Coconut oil is a pre-biotic. It is "food" for the "good" bacteria in your gut. Sometimes constipation results from an imbalance between the "good and bad" micro-organisms.  As with anything, start with a small amount.  I started with ¼ teaspoon in a soup 2-3 times/day and worked up from there. I got results after a day and when my Mom was sick, she got relief on the 3rd day after we increased to ½ tsp 3/day.
   
• Probiotic bacteria:  Consuming foods and supplements that contain probiotic bacteria can increase the population of good guys in your gut. Fermented foods are good sources -- yogurt, kefir, traditional sauerkraut, kombucha. Any health food/supplement section in a grocery store has priobiotic supplemtents. If you want suggestions for a good one, the staff at a decent health food store can guide you. Again start with a small amount, ¼ or ½ of the amount suggested on the bottle.
   
• Vitamin C: A "natural" remedy suggests taking Vitamin C to bowel tolerance when one has an infection such as the common cold. This may relieve constipation, though I've never needed to use it that way. Again, you need to work your way up, starting say with 500 mg 3/day, then 1000 mg 3/day, 1500 3/day, etc. When using this to fight infection, one eventually causes "loose" elimination and then decreases to the previous dose.

[CAFFEE60]

I am drug free since Oct.5/16. My pain is awful. I don't know which label to use. Akathisia? Parkinsonism? Neuropathy?

 

All I know is that since stopping the quetiapine ( and a year before stopped clonazepam) my body is in constant pain, I can't digest my food, I am constipated, my tongue is swollen, I have trouble walking, and sleeping. I have found some support from my naturopath, osteopath, and through massage. I almost fell backwards down an escalator because my body is so stiff.

 

I have tried to exercise. I tried Qi Gong and gentle Yoga. I am using Lavender and GABA to help calm things. I am trying to be hopeful that things will improve. When I feel better I know that soon the pain will return.

 

It's been 4 months. I am 64. I am terrified that my symptoms are going to be permanent.

 

When my naturopath wonders if this can still be withdrawal I try to be patient with her. Is there any literature I can give her? How do I stay positive?

 

I have muscle wasting and growing belly fat. My diet is good. I am struggling.

Edited February 20, 2017 by scallywag
added paragraph breaks

[Happy2Heal]

Caffee, I am so sorry you are still struggling with these symptoms

 

I don't know if this will help you at all but I CTed off a  high dose of seroquel and had very similar symptoms although not as severe as yours. I can tell you that for me, at least, all of those symptoms went away in time. How much time? I'm not sure, I think it was about 5 mos, with them coming and going in waves, as WD symptoms often do.

 

I was a bit younger (I am 61 now) so I don't know if that is a factor, but even at 64 I would still expect that your body and your brain will continue to heal, albeit perhaps a bit slower.

 

is there any way for you to get physical therapy in a heated pool? that might help, I don't know. It helped me when I was going thru it, I wasn't getting PT specifically for WD symptoms as I didn't know I had them, I was in PT for knee pain but the pool therapy helped with my physical WD symptoms

[scallywag]

Caffee
 
I'm sorry you are still suffering. Your symptoms are very unlikely to be permanent. The CNS (central nervous system) recovers in mysterious ways and follows no calendar to do its work. We're left with disconcerting and painful symptoms as the CNS adapts to the drug free state.
 
The physical symptoms you list are not uncommon -- swollen tongue, body stiffness, issues maintaining balance. 
 
The pattern of feeling better for a period followed by a period of symptoms is very common. Someone came up with a descriptive name for the pattern, "windows and waves." You can read more about that here:
The Windows and Waves pattern of stabilization.
 
You are paying the naturopath for her services and she purports to be a naturopathic medicine professional. Perhaps SHE could do the research? (I get so when people who say they can help us don't bother to learn anything that will allow them to ACTUALLY help us.)
 
She could start by browsing the Journals forum here at Surviving Antidepressants; she'll find many studies about withdrawal summarized and linked there.