Althea: my healing journey - freeing myself from Lamictal and Seroquel

[Althea]

Hi everyone,

 

I am new here but I have been reading this site for a while already. I am so grateful for all the wise advice and encouraging stories I have read from here.

 

I am in a way surviving an antidepressant: I was given Cymbalta back in 2008 for depression. It caused mania within months but the doctors did not notice it, they considered me a success story.

 

So I got depressed second time 2009 and was given Seroquel and Lamictal. And told I would have to take them for the rest of my life. 2009 I took Seroquel XR 300 mg + Seroquel short release 300mg + Lamictal 300mg. (Taking both XR and short release Seroquel is a stupid mistake by one doctor.)

 

So I have been taking those drugs now for 9 years. I have not been depressed or manic since 2009 and my life has been pretty stable. On the way the doses of short release Seroquel have gotten up and down 25mg at a time depending on how I was sleeping and feeling, between 200-375mg.

 

2010 I lowered Lamictal dose from 300mg first to 250 mg and then to 200 mg. Lamictal dose has been 200mg the years 2010-2015.

 

2011 I managed to lower the Seroquel XR down to 200 mg: by first tapering the short release 25 mg at a time down to 250 mg and then switched XR down to 250 mg and short release back up to 300 mg.  I did that again, so since 2011 XR dose has been 200 mg.  Short release has now been for several years also 200mg.

 

I began to taper Lamictal August 2015, first 25 mg down to 175mg, held there for two weeks, and then down to 150 mg. I got withdrawal symptoms (dizziness, headache, exhaustion especially after exercising and diarrhea) and realized that doctor’s advice is not reliable.  I found Everythingmatters.com and this site, and got so much wiser. I understood that all my earlier tapers, too (which I had all done with permission by my docs) were too rapid and that was the reason I had not managed to get the doses lower than they were. So I waited and the symptoms went away.

 

June 2016 continued tapering Lamictal, now with 10 % rule and held for 3 weeks between tapers. I got it down to 100 mg by the end of the year and had no significant symptoms. I have continued tapering during this year and have gotten Lamictal down to 50 mg by now (July 2017).

 

This was a rather long intro to my question.  I have managed to stay pretty healthy despite taking these drugs but now my blood tests showed that I seem to have developed problems with both thyroid and liver during this last year.

 

So I would like to hear your thoughts on what should I do next.

 

Can those pretty dramatic changes be a result of Lamictal “getting out of the way” or is it my body hitting tolerance with Seroquel?

 

Should I still continue with tapering Lamictal as I had planned or should I let it be on 50 mg and start tapering Seroquel instead?  It’s going to take several years going with Lamictal from 50mg down to zero (depending on at which dose I make the jump) and I am not sure if it’s wise to take 200+200mg of Seroquel all those years.  But I also know that if I taper two drugs, it will be more difficult to tell what is doing what.

 

I will make my own decision and take full responsibility of it but it would help a lot to hear what you think.

 

Also, it is possible that those problems have their roots in a not so healthy diet – earlier I was eating in a healthy way but during the years I have somehow forgotten its great importance. Now I have made the changes for better.

 

So, my goal is to eventually get rid of my drugs and stay healthy.  Or, if I do get sick during or after withdrawal, my goal is to heal.  It’s paradoxical: I have been pretty healthy on drugs and I know I may get sick off drugs. But on the other hand, nobody knows how long my body is going to tolerate the drugs, it is showing signs of getting tired and we all know that drugs aren’t good for us in the long run.

 

That’s all for now. I will be documenting my journey here.

 

Best wishes to you all,

Althea

[mammaP]

Hi Althea, welcome to SA.  It is good that you found us and started to take control of your own body. I agree that is was not really a good move to prescribe both types of seroquel, and don't understand why a doctor would do this.  I think you might be best to hold the lamictal dose for now, as you suggested, have a break from tapering to allow your brain to catch up then start tapering the seroquel short release while holding the lamictal and the extended release seroquel, we can come back to that later. You are right that it is difficult to know which drug causes a problem when tapering 2 together. 

 

I will get some links for you to help you with your tapering of seroquel.  

 

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

Why taper 10%

http://survivingantidepressants.org/index.php?/topic/1024-why-taper-by-10-of-my-dosage/

 

 

It will help us if you can fill in your signature, we ask all our members to do this, you can find instructions here..

http://survivingantidepressants.org/index.php?/topic/12364-please-put-your-withdrawal-history-in-your-signature/

 

 

[Althea]

Hi mammaP,

 

Thank you for your answer. I think your advice is wise and I will be giving myself now a break from tapering. This is now my 3^rd week with Lamictal 50 mg. I’ll leave it there and wait a couple of months before starting with Seroquel.

 

Yes, this really is me taking control of my own body. I’ve been having some kind of avoidance, not wanting to think about the drugs and their nastiness all the time – and as long as I was “healthy”, well, it was fine. But now I’m really worried with my physical health.  And I do understand that it is not real health while on the drugs but this thing called “dysfunctional homeostasis”.

 

Thank you for the links, I have read the Seroquel  thread now and I’m already familiar with this 10% tapering. I’m sorry for not making the signature right away – I thought they had been removed but now I realized that they were not visible to visitors anymore. I’ll be doing mine next.

 

The reason why I take both IR (immediate release, which was the correct term) and XR is that my docs have been changing all the time. Back in 2009 I had severe depression with insomnia and anxiety and one doc prescribed me 300mg XR. Then another thought that IR would be better for the insomnia. I took both but got really bad constipation and then this second doc told me to “just quit the XR”.  I did and I got terrible brain zaps, it felt like the zaps made me jump in my bed at that moment I was about to fall asleep.  I was terrified and had to continue with both. And all the seven docs ever since have just been renewing the old prescriptions.

 

So I have been the one who has wanted to lower the doses along the way and the docs have been prescribing what I have asked for, which is good but they really do not know much and do not care. I was such an obedient patient, for years I really believed I would have to take the drugs for the rest of my life. Getting to know more, I started thinking that I might be able to get rid of Lamictal, especially after realizing that its usefulness for depression prevention is near to placebo. But it’s been only recently I have dared to think I really might free myself from both of my drugs.

 

To make clear, Seroquel 25mg was originally given to me for sleep. I took fractions of that during my manic time to get some sleep and then when I ended up depressed again, they just multiplied the Seroquel I already was taking. I also think that insomnia has been my biggest problem, been causing all other problems. The thought that tapering and quitting Seroquel will very likely cause insomnia is not a nice one and I know I will have to be very careful.  And to be clear, I have not ever had any psychotic symptoms.  

 

Sorry for writing such a long messages…

 

Best wishes, Althea

 

[mammaP]

It is likely that your insomnia is drug related and could improve as you taper. It is common for a drug to stop helping the symptom it was prescribed for and actualy making that symptom worse eventually.  I am glad that you found us, one day you will be free of these drugs and feel healthy again. 

[Althea]

Thank you, it feels so good to hear that you believe that one day I'll be drug-free and healthy

 

I'm sorry for not being clear enough: I do not have insomnia at the moment. When I said it has been my biggest problem, I meant those early years.

 

At the moment Seroquel knocks me out and tapering Lamictal has increased my need and ability to sleep, too. But I'm worried that in the future the original insomnia + Seroquel withdrawal insomnia = deep trouble. But let's hope that everything is going to go fine.

 

When I last wrote I was worried that I might have a developing liver damage, which Altostrata mentions on the Why taper by 10 of my dosage –thread as a serious adverse affect and says that then “you may choose to go off sooner rather than later”.

 

I started reading the book Healing With Whole Foods and made some changes to my diet: left out all white flour and white sugar and started to eat whole food - and that helped a lot! I hadn’t known how much extra load all that excess refined carbohydrate puts on the liver. For a weekend or so I felt bad, I think it was the sugar withdrawal  but after that I started to feel so much lighter, all that swelling and even pain in the liver area is gone. I am waiting to get new blood tests next month and will be reporting the results here. I am hopeful now, food is such an important medicine, especially for us with our bodies facing all that extra burden from the drugs.

 

But that doesn’t mean I wouldn’t want to get rid of my drugs - I certainly do! But I know I have to be patient, this is my 6^th week now holding the current doses and I will be holding about a month or so. In the meantime I have tried to figure out how to start with my Seroquel taper. I read the threads about dry cutting and liquid tapering and I think liquid tapering would be best. What do you think?

 

How would you suggest counting my Seroquel tapers - total being 400 mg of which 10 % would be 40 mg or counting just IR 200mg of which 10% is 20 mg?

 

I understood that if I choose liquid tapering, I should start with changing some of my IR to liquid form, wait to get used to that and then start to taper. How much should I take in the liquid form, 25 mg or 50 mg? I think 25mg would sound safer to start with… I wonder if the “knocking out effect” will be even quicker and stronger with the liquid?

 

Best wishes, Althea

 

[Althea]

 

Update:

 

 

Good news! I got the results from the new blood tests and they showed that the problems I had with liver and thyroid have diminished! I started feeling better after starting to eat whole foods, and tests proved that I really am doing better   So relieved.

 

[Althea]

 

I have finally made some decisions about tapering Seroquel. I have been holding for 15 weeks (over 3 months) now since my last taper with Lamictal. I have decided to taper Seroquel as liquid. I started taking 25 mgs of my 200 mg IR dose as liquid 4 weeks ago and went on taking  50 mgs as liquid 2 weeks ago. XR will remain 200mg and I take rest of the IR dose as tablets (100+25+25).

 

My equipment includes a 200ml graduated sylinder, 20 ml oral syringes which can measure 1 ml, and a glass jar. I have been cutting those 25+25 in halves and letting them dissolve in 100 ml water while gently moving the jar so that the particles do not stick in the jar. 

 

I have decided to count my tapers from the IR dose only, so my first 10 % taper will be 20 mg.  And as I have 50 mgs in 100 ml of water, 20 mg will be 40 ml. So I would pull two times 20 ml off of the liquid and take the rest (60 ml = 30 mg).

 

I would be so very grateful if someone could comment on my plan, does it sound okay?  

 

 

[MollyN]

I love your proactive, whole-body approach to healing Althea!! Keep up the great work!!! xxxmollyn

[Althea]

Thank you for your lovely support, MollyN, you made my day! 

 

And today is the day when I finally begin my Seroquel taper.

 

I will be reporting here how it goes. Hopefully well!

[Althea]

Update:

 

So, I lowered my IR Seroquel from 200 mg to 180 mg (I took 100+25+25 as tablets and 30mgs as liquid.) It caused mild headache during the first week, a couple of mornings waking up too early with anxiety during the second week. Third week went fine. And this week I lowered from 180mg to 165mg (by taking 100+25 as tablets and 40mgs as liquid). I haven't noticed any symptoms yet. But I guess this is the easy part, being on so high doses. The XR is still 200mg and as soon as I get the IR dose to 150mg,  I intend to make a switch: XR down to 150 mg and IR up to 200mg.

 

It feels good to finally get started with this. I got used to liquid tapering and all the measuring pretty quickly and it feels good to be able to taper less than 25mgs at a time. Thanks to this site!!

 

[Althea]

Hello everyone!

 

I’m finally back to update my progress with my Seroquel taper. That previously described lowering back in November was not a good thing to do. It hit me during the second week: I got really bad, pulsating headaches and a few totally sleepless nights, too. I realized that instead of one 10% lowering I had actually made three changes at once: lowered the total dose, lowered the tablet dose and increased the liquid dose. It sounded good in theory (saving the 25mg tablets) but turned out to be a mistake. Luckily, I got better pretty soon but certainly learned my lesson: do not change more than one thing at a time. I also learned that dropping 10% and holding only three weeks was too much, and slowed the taper down.

 

I continued tapering only 5mgs at a time, which was only 3% drop, and at first held 4 weeks in between. It sounds probably too cautious, but I wanted to make some progress and at the same time stay functional during the holiday season. And it worked well! I noticed a pattern: some headache came always by the end of the second week but it resolved during the third week. I got the IR dose down to 150mg this way.

 

I made the switch 7 weeks ago: I lowered Seroquel XR from 200mg to 150mg and increased Seroquel IR from 150mg to 200mg. That has been causing me mild headache that has been almost continuous for several weeks. I was wondering should I have made some compensation with the IR?  Dropping 50 mg of the XR is much, but it’s the smallest drop one can do. So should I have added some IR instead of just switching the existing doses? The headache seemed to get worse by the end of the day, which can be related to the 50mg extended release drop (I take all my meds before bedtime) and adding 50 mg to the IR dose probably wasn’t enough to compensate. Does anyone have any thoughts on this?

 

I am planning to let my Seroquel dose stay at this level through the summer and start tapering Lamictal now.  My goal is to get it down to 25mgs. And then I plan to wait for some time and then continue with Seroquel again.

 

Best wishes and sunshine to you all!

 

Althea

 

[Carmie]

Hi Althea, 

 

Wishing you all the best with tapering the Seroquel. I’ve been tapering it too but I was never on the XR. I’ve managed to get down from 300mg to 7.5mg. I’ve got many years to go as the smaller the dose the tinier the taper.

 

Please let me know how you go.

 

I don’t know anything about swapping XR with instant release though. I’ve always just been on one dose of instant release.

 

How are you doing?

 

Sending hugs🤗

[Althea]

Hi Carmie,

 

Thanks again for stopping by. I think I wrote too much about myself in your thread and I am very sorry about that. I'd remove it if I could. I'm sorry and won't do that again. All the best for you,

 

Althea

[Carmie]

7 minutes ago, Althea said:

Hi Carmie,

 

Thanks again for stopping by. I think I wrote too much about myself in your thread and I am very sorry about that. I'd remove it if I could. I'm sorry and won't do that again. All the best for you,

 

Althea

Please write as much as you like. I really appreciate it. You said you weren’t on line much so I haven’t replied to you yet. It’s bed time for me. I live in Australia n it’s close to 11pm.  I’ll reply to your message in my thread tomorrow when I have a bit of brain.

 

Thank you sooo much for visiting my  thread, sending you the biggest hugs xxxxx

[Althea]

Ok 🙂 I made too quick conclusions... I'm still feeling kind of newbie here, learning how to operate. And yes, that's true, usually I'm not online every day, so there is absolutely no rush in answering to my writings.

 

Good night to you, sleep well. Sending hugs 🤗

[Althea]

Update and a question about switching Seroquel doses:

 

I have started tapering Lamictal again and the first week on 46 mg went fine. Just like before, decreasing Lamictal has made me sleep more deeply, which is a nice thing. I intend to get Lamictal to 25 mg, then hold for a while and then continue tapering Seroquel.

 

 

Planning my future tapering, I have read once again the entire Tips for tapering Seroquel thread, but I could not find anyone who would have been on both XR and IR. Altostrata says this in Tips for tapering  Seroquel :

 

"Note that if you cut up quetiapine XR or switch your entire dose from the extended-release form to the immediate-release form, you may need to take a half-dose twice a day or make other dosage adjustments up or down according to your reactions."

 

 

I did not switch my entire dose, I switched from 200mg XR & 150mg IR to 150mg XR & 200mg IR. I didn’t make any adjustments, just swapped the doses.  My reaction was headache that was getting worse towards the end of the day and towards the time that I take my XR dose (7PM). I take Lamictal and entire Seroquel IR dose at 9PM. The headache started during the second week, lasted several weeks and passed eventually (I would not have started tapering  Lamictal if it didn’t).

 

I will have to do this same switch three times in the future, so it would be nice to know any hints of what to do to avoid symptoms.

 

I appreciate any ideas, thanks in advance.

 

Best wishes to you all,

 

Althea

[Althea]

Update:

 

Last week I spent one entire day here, reading though the threads and trying to find information related to my taper plans. That turned out to be a mistake. I should have known better, no binges during tapering. And I am very sensitive even without tapering and I should limit my screen time. So, I don’t know was it just too much time on computer or did the troubling stories I read effect, too, but after that the Lamictal withdrawal headache hit me like a hammer. I had a few sleepless nights with that terrible headache. I took it easy on daytime and stayed away from screens and did soothing stuff. It has now gotten better, though it’s not completely over yet.

 

Additionally, I think I may have continued tapering Lamictal too soon after my Seroquel XR switch. I waited 8 weeks but I should probably have waited longer. Lesson learned: when the headache subsides, wait a few weeks or months more to heal more deeply before continuing. This is going to take so many years that it’s better to stop counting them. I’ll just have to take it one day at a time.

 

Or it might be that now when I have reached below 50 mg with Lamictal, tapering with 10% rule is too bumpy. I’ll have to wait now that I’ll get better and when I continue, I plan to give BrassMonkey Slide a try.

 

And from now on I try to keep my daily screen time at minimum. That means I cannot participate here much, at least not on a daily basis and I’m sorry for that. My main contribution to this community is to update my progress, tell my story as it unfolds and hopefully one day I’ll write my success story.

 

Healing wibes to you all,

 

Althea

 

 

[Carmie]

Hi Althea, 

 

How are you going? Sending hugs🤗

[Althea]

Hi,

 

It’s finally time for an update.

 

As described earlier, I got hit with symptoms when I lowered Lamictal from 50mg to 46mg. I waited for one month and then in June I started to use the BrassMonkey Slide method to be able to continue tapering. It did work quite well: I was able to go on. But I went on despite the symptoms I was having. They were milder now with BM Slide but they were present. And at the same time I had a massive project going on which was physically demanding and stressful, too. And I didn’t get nearly as much sleep as I would have needed. (I didn’t have insomnia but because of the project I didn’t have enough time to sleep.)

 

I got my Lamictal dose down to 35mg in October and it’s been that ever since.

 

Now that I look back I admit that it was really stupid to taper in the middle of those circumstances. And it was stupid to push it against the symptoms.

 

I got headache, fatigue, exhaustion when trying to exercise and stomach issues which gradually got worse. For over two months I suffered pain in my gut and loose stools.

Then I read about glutamate hypersensitivity and was shocked to realize that I was feeding those gut issues with my own choices. I had been taking a probiotic to ease the symptoms. But it included yeast which is a source of glutamate! It made it all much worse! And others were nuts, vegan protein powder and seitan that I ate almost every day and that were high in glutamate. When I realized this, I stopped eating those immediately. Right after that the pain in my gut went away and in a couple of days the loose stools got close to normal.

 

Now it’s been over five months since the last change in my dose and even though my life is now calmer, my symptoms still worsen if I try to eat nuts or try any exercise more strenuous than walking or swimming, for example. I am very tired all the time, no amount of sleep won’t change that and I have mild headache all the time.

 

I have been waiting these symptoms to go away before I can continue with my Seroquel taper but these symptoms haven’t been getting any better lately.

 

So, my question is, should I now

 

a)      wait patiently until these symptoms go away and then continue (but what if this glutamate sensitivity thing lasts for like years?)

 

OR

 

b)      add some Lamictal (2mg maybe?) to see if it would make the symptoms go away (but is it too late reinstate after more than 5 months?)

 

OR

 

c)       just accept this state as my new “withdrawal normal”, make a switch from 150mg XR and 200mg IR Seroquel to 100mg XR and 250mg IR, wait and then start tapering that to see if lowering Seroquel would at least alleviate the fatigue?

 

 

[ChessieCat]

1 hour ago, Althea said:

a)      wait patiently until these symptoms go away and then continue (but what if this glutamate sensitivity thing lasts for like years?)

 

I became glutamate intolerant when I got hooked on Pringles sour cream and chives which contained MSG.  I had to eliminate natural glutamates:  plums/prunes, grapes, tomatoes, spinach, mushrooms, hard cheeses, peas, corn.  After reducing glutamate for a while (can't remember how long) I was gradually able to add things back in and don't have any issues now.

 

This document also mentions additives which should be avoided:  https://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0019/286111/Diet-Glutamate-low.pdf

 

 

[Althea]

ChessieCat, thank you so much for sharing your experience and that document! That is the only scientific document I’ve seen on this glutamate issue.

 

I will avoid all known sources of glutamate for some time and then try them one by one. Hopefully that is enough the resolve this. It’s going to be a really long hold but I’ll take it as a patience challenge.

[Carmie]

Hi Althea, 

 

Thanks for popping around to my thread. I’m glad your symptoms have settled down a little bit, but it might still take a little while as you’ve made quite a lot of changes, plus the glutamate problem. I’m glad you’re going to continue to hold. 

 

If you go up to Search on the top of this page just put in msg and you’ll find a heap of threads of other people who have had trouble with it too. You might be able to chat with some of those people as well.

 

Take care, sending hugs🤗

[Carmie]

Hi Althea, 

 

How have you been doing?💚

[Althea]

Hi,

 

It's time for an update. I eliminated all glutamate from my diet and that resolved the symptoms. I'm so grateful to ChessieCat for that useful document. But when I started adding things back, the symptoms came back, too. Then I made a second elimination and the symptoms went away. I have now been using small amounts of natural glutamate foods and have been able to keep the symptoms at bay, most of the time. I have found that vegan digestive enzymes and probiotics (without yeast) have been helpful.

 

It was 26 weeks since my last change in Lamictal dose when I decided to move forward. April 29th I made a switch in my Seroquel dose: XR down to 100mg and IR up to 250mg. That caused me headache in the second week. The headache started at 3 PM and lasted until I took my XR dose at 7 PM. During the third week the headache moved downward in my body, I had flu-like symptoms, ache in my bones and feeling cold and hot. Then I had ache in my muscles and during the fourth week I woke up way too early with mild anxiety. That resolved after 5 days. I have noticed that I need to take my meds at exactly the same time every night or I get headache.

 

May 27th I started taking 25mg of my Seroquel IR as liquid and the next step is to take 50mg IR as liquid. When I get used to that, I plan to start tapering. As I seem to be very sensitive and got such symptoms from switching the doses, I'm planning to go slow and taper only 5% and wait for at least 4 weeks. I tried BM Slide with Lamictal last year, but even with longer holds and shorter tapering periods, it caused the symptoms to cumulate, so I won't be using it for that reason. I find it easier to follow my symptom patterns with monthly tapering. Because after all, it's good to see the pattern and when the symptoms come, I know they will pass, as they have passed before.

 

Healing wibes to everyone,

 

Althea

 

 

 

 

[Althea]

Updating my progress:

 

Earlier I tried to find information on how to do this Seroquel XR and IR taper but I couldn’t find anyone else who would have done this. Now that I have myself tried both ways (first lowering the IR dose, then doing the switch and first doing the switch, then lowering the IR dose), I know that the first way is better.

 

As I had added the IR dose to a level that was 50mg higher than previously, I got hit with symptoms of having a too high dose, the worst being complete night time mouth dryness which led me to wait only 4 weeks after the switch (the symptoms that came from lowering the XR dose had resolved already) and start taking 25mg of IR dose as liquid. Taking 25mg as liquid made the symptoms even worse and after one week I had to return taking all as tablets. I waited for 4 weeks and got stable again. But there was a problem: liquid tapering was out of question because the liquid form made the symptoms worse and dropping 25mg at a time had not been my plan. It was 10% of 250mg, though, and as it was obvious that I was taking too much of the drug, I decided to give it a try, knowing it was a bit risky for me.

 

Luckily, it went pretty well, I noticed my usual pattern: some headache and other symptoms arising towards the end of the second week and eventually resolving by the end of the third week. That encouraged me to do it again: after 5 weeks I dropped another 25mg (now being 11% of the 225mg IR dose). As I’m writing this I’m still in the middle of the symptoms caused by that lowering (mainly headache and overall achiness) but I believe I’ll get better eventually. I may be taking a break from tapering for the rest of the year and let things settle down at this level of dose (100mg XR and 200mg IR).

 

It feels good to make some progress in tapering and then concentrate on other things in life for a while. Holistic healing is an ongoing process for me and having breaks from withdrawal symptoms is helping me in learning to listen to my body more closely. I am learning to trust the distinct cues that my body gives me – cues that have been ignored and shut down, first by my parents, then by me and eventually by psychiatry and its nasty drugs. But I see healing happening all the time in tiny bits, so there is hope!

 

Wishing continued healing to you all,

 

Althea

[Carmie]

Hi Althea, 

 

How have you been doing with your tapering?🧡

[Vasherr]

Hi, @Althea,

 

I would also like to know how are You as long time has passed since Your last update, please reach out and let us know.

 

Wishing You a lifelong window!

V.