Augustiny's Citalopram Withdraw

[augustiny]

Well, I think it is about time I introduce myself as I have been reading all of your posts for awhile now and gaining a huge amount of information. I am currently at the very beginning stages of a Citalopram taper. To give you a full picture, my journey with AD's began when I was about 11 or 12, it's hard to remember but I was given Paxil.

 

I have a really rare degenerative eye disease and this is only important to the story because I was misdiagnosed for years with hysterical blindness. It got to the point that doctors believed I must be deeply mentally disturbed for insisting for so long that I was having trouble seeing. My parents would sneak around the corner while I was reading trying to see if I would only bring the book close to my face once someone else was in the room. Eventually this landed me in therapy and on a pretty numbing dose of AD's for a little kid.

 

I don't remember how much but I just remember feeling like I couldn't think or do anything. Of course, I still thought I couldn't see and I guess I seemed happier or something because they weened me off after about a year and I don't remember any adverse withdraw symptoms although being a young kid I was kind of just wanting to play and not too worried about things.

 

My next dance with pharmaceuticals came when I was about 17. I had by this point finally been diagnosed with an eye disease. By the time I made it to the head of an ophthalmology department at a major university my retina had holes in it so large it was fairly easy for him to diagnose. It wouldn't have made any difference medically had I been diagnosed earlier but it would have saved me about 8 years of thinking I was insane and my first ride with pharmaceuticals.

 

At 17 I was pretty anxious, I had just become legally blind and instead of being put in touch with a counselor who could help me work out my fears about going blind they just handed me Xanex. I really liked the Xanex, it made me feel so relaxed like I didn't care I was going blind anymore. I think I was abusing it and my mom eventually flushed it down the toilet. I was not on the benzos for too long so my main symptom of withdraw was increased anxiety which probably lasted about a month and then I leveled out.

 

Citalopram entered the story when I was 18. I was really depressed and paranoid. In retrospect, I had a severe B12 deficiency. A few years later my immune system crashed and I ended up in the hospital for this deficiency. Once I got on B12 shots my psychiatric symptoms effectively disappeared. Of course at 18, my doctor never did a blood test to see if there was a cause for my depression, just handed over that script for 10 mg.

 

Coming on to Citalopram I had some anxiety at first but it leveled out after about 2 weeks. I stayed at 10 mg and I have never increased. I have been on Citalopram for 6 years now. Not because I really need it but because I CAN't GET OFF. I have tried twice before. The first time was cold turkey and I got so incredibly sick. Crippling vertigo, nassau, body aches. I couldn't even leave my bed I felt like I was dying. I reinstated after a few days and felt better within a few hours. The next try was to switch to every other day. It was actually fine for awhile and then I crashed after a few months of this. Got terrible anxiety and panic attacks. Went back on daily dose and anxiety subsided after a week or two.

 

This time I am going to do it. Or I keep telling myself that. I have built up so much fear around going off that I am struggling. I started a 10% taper 4 days ago switching from tab to liquid and dropping to 9mg. So far my withdraw symptoms have been present but under control. I have been mostly having physical symptoms like I had before but just way less intense. My stomach has been upset, I have been dizzy as well as some waves of tingling on my skin almost like goose bumps. The first night I had insomnia but that seems to be slowly improving although I am not sleeping as well as I normally do.

 

I have been having waves of anxiety and not feeling like myself. I am not sure if these are WD symptoms or just my own feelings surfacing. I am really struggling with my decision to get of ADs. Although I do not think I need them, or probably ever did, I was told from the time I was 8 that I was crazy and it has kind of stuck with me.

 

I have afraid I have damaged my brain beyond repair with ADs and that at some point in the taper things will get so out of control I won't be able to come back from them. I keep having these really negative thoughts that I can't do it and I should just stay on the Citalopram forever instead of going through the difficult task of withdrawing. I am trying to work through these fears but it is really hard. I would say that's what I am struggling with most.

 

So that's my story. I don't know it that was too long and sorry if it was but I would love to hear people's feedback on fear and how they have overcome it. I am also curious about this up dosing thing. I don't think I need to right now but at what threshold do you decide to upose? If you have any WD symptoms? If they become difficult? If they become intense?

[bubble]

Hello Augustiny and thanks a lot for sharing your story.

 

It's a very moving testament of mistakes doctors make. I'm so sorry you have been so badly treated and admire the calmness of your acceptance. How is your eyesight now?

 

I totally understand your fear of tapering again after two painful experiences. But this time it is very different. You know exactly what went wrong and you know how to do this the right way. That's why the result will be very different. You have already experienced that going this way makes WD  symptoms so much less pronounced than before.

 

I also have experience of painful failures to stop medication when I knew nothing about the safe way to do it. The same as you, I've also found incredibly useful information here which made it clear to me that I was doing things wrong and not that it is impossible for me to discontinue. The support I get here in this difficult project keeps me calm and hopeful and so far my experience has been incredibly different than ever before. I just believe that if we go as slow as our CNS allows us we can do it.

 

So I'm glad you've found the site and I really believe we have what it takes to win this time.

 

best,

bubble

[Rhiannon]

It makes me so angry to hear how they threw these powerful brain-altering drugs at you like candy. Grrr! I'm so sorry and like Bubble I am impressed by your calm acceptance. 

 

I understand the fear of withdrawal, because I too have had some terrible experiences from coming off psych drugs. That fear will lessen as you gain experience with your taper and you realize that you are in control.

 

I do recommend beginning the taper very conservatively. The cut from 10 mg to 9 mg is probably okay, but please hold now for as long as it takes for all of your withdrawal symptoms to settle down, and then wait couple of weeks after they are settled before making another cut. Then I would recommend making the next cut only 5%. That would be 5% of your new dose of 9 mg, so 0.45 mg only.

 

If you find the cut from 10 mg to 9 mg is very rough for you, you can make your next cut even smaller than 5%.

 

If you make smaller cuts and take longer breaks at first, this will minimize the withdrawal symptoms and help you to develop confidence. You will also learn what your body can handle. If you find that with the smaller cuts and the longer breaks between cuts it is so easy that you want to go faster, then you can ramp up your cuts and your speed.

 

It is much better to go slow than to overshoot and then have to updose. After a crash and updose it can take a very long time to settle down enough to taper again. It's harder on your whole body and your nervous system to go that way.

 

I find that this approach--going very slow at first and then ramping up--is much better than going faster at first and getting hit hard with withdrawal symptoms and then taking a long time to settle down.

 

Given that you have been on these meds during the years your brain was growing and developing, I think a conservative approach (no more than 5% cuts at a time) is the most wise for you.

 

If you go slowly enough, make small enough cuts and take long enough breaks, you WILL be able to taper. But it may need to be very slow given your history. In your case there is no advantage to going fast. You have nothing to lose by going slower and much to lose by going too fast.

 

It sounds like you're using the liquid. Do your vision problems allow you to measure with a syringe, can you see well enough to work with that? If not, do you have someone who can help you with the measuring?

 

Again, I am fully confident that you can taper down and either get to a very small dose (1 mg or less) that will allow you to feel normal and enjoy a normal functioning brain, or get all the way off. But given your history of being on and off meds at young ages, I think it is best to be very conservative and to plan to take at least a couple of years for the whole taper, to give your brain and body time to adapt fully to the changes.

 

Glad you're here, welcome!

[Rhiannon]

Also, if you haven't already, please look at the charts here (beginning on page 4):http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

(Since you say you are reading posts I am assuming you can see these charts, I apologize if I am presuming too much.)

 

I think the first one is citalopram.

 

From these charts you can see how the receptor occupancy drops sharply as you get lower and lower on your doses. I have found that this makes it easier for me to be patient with my taper. Also, as you can see, the drop from 10 mg to 9 mg does not produce as much change as later drops after you get below say 8 mg.

 

Again, I encourage you to be cautious at first. I know that's the opposite of how we usually feel going into a taper--we are usually enthusiastic and want to just go for it. But if you can take it slow at first, you will learn what your limits are, safely, without hurting yourself. Then you can stretch those limits a little at a time. And you will be in control.

[augustiny]

Bubble and Phil thank you so much for your responses.  I feel really good about the drop to 9mg.  Although I am having WD symptoms I feel really proud I was able to make that first step.  After four days it seems like the physical stuff is starting to let up a little bit so I hope this continues to improve over the next week or so.  Bubble, I think you are absolutely right about taking it slow.  1mg might have been slightly too large of a jump for me I know it will only get harder from here.  It seems like I am tolerating the 1mg drop but would rather be in a place where it does not really bother me to drop. So if that is half a mg or even less than half an mg I would rather have that experience than struggle.  This might be wishful thinking since I know some people struggle with even the tiniest little drops but it is worth trying.  I am planning to take at least a month before I consider another drop and that's only if I am feeling really good. I am much more afraid of crashing then I am of this taking 3 or 4 years.  

 

As far as my vision, I am still legally blind.  I have a bit of vision but not enough to fill a syringe.  Right now my husband is doing it for me but I am trying to come up with a way I can do it myself.  Maybe a stopper or something.  Possibly counting drops once I get down to smaller doses.  

 

My current doctor is indulging me by suggesting a 1mg drop every two weeks.  She made sure I knew that this was so ridiculously slow that no one could ever get WD symptoms from this.  I asked her if it would hurt to go even slower and she looked at me aghast.  Not taking her advice but happily taking her liquid prescription.  

[augustiny]

Also Phil thanks for pointing me to that paper.  It's really wild to think about.  It really solidifies why a really slow taper at lower doses is so important.  I feel empowered by that knowledge to take things slow.  I am hoping this 9mg dose stays tolerable for me until I stabilize but if not, I won't beat myself up if I need to uprose to 9.5 at some point.  Based on the fact that I feel very slightly better today I am going to try and stay positive and take that as a good sign.  

[Rhiannon]

You may do just fine on the 9 mg. Usually that first drop is easier, you can see why on the chart.

 

If your husband can measure your doses for you that should be okay. If you get some small brown bottles, he can measure several in advance for you and you can store them in the refrigerator until you need them. Citalopram is pretty stable in solution, at least according to a paper I found on the subject. (I think it's in the Tapering section.)  I make up my own liquid and keep them for ten days.

 

You have exactly the right attitude for success and I think you're going to be fine!

[bubble]

 

 

You have exactly the right attitude for success and I think you're going to be fine!

 

I also wanted to say that! This is the attitude of a "winner" in this process:  I am planning to take at least a month before I consider another drop and that's only if I am feeling really good. I am much more afraid of crashing then I am of this taking 3 or 4 years.   

 

This is a truly great insight: you have a plan but recognise who is the chief authority here: your CNS. You also recognise that success in tapering is not speed but harm reduction.

 

We will do our best to support you on this journey that we are actually taking together: each of us with our own "luggage" that we want to be rid off at the end of the trip...

[augustiny]

I also wanted to add, in case anyone reads this that is switching to the liquid form of citalopram from the pharmacy, it is important to be aware that the liquid form contains sorbitol.  I am not sure if this has been brought up in ay other thread on this forum but some people can be very sensitive to sorbitol.  Sorbitol is an artificial sweetener that is in a lot of sugar free candy as well as gum.  Many people don't realize that they are having a reaction to sorbitol but it is more common than most people think.  I am very sensitive to artificial sweeteners and generally do not chew gum because most gums contain sorbitol.  I have been noticing that about 30 minutes after I take my dose in the morning I find that I feel jittery and sometimes get heart palpitations that last for about an hour and subside.  I am fairly certain that this is due to the sorbitol.  I mention this because if anyone else is experiencing this feeling, they might not realize it is the sorbitol and think it is WD symptom instead.  It can also cause indigestion and diarrhea as well as weight loss.  Now most studies will say that you need to basically chew gum all day to achieve these effects but as we know here some people are much more sensitive to some chemicals than others.  Just something to think about and it might also be a reason to consider making your own solution if sorbitol is an issue for you.  Of course there are other chemicals in the citalopram solution that I am not as familiar with so if someone knows they have chemical sensitivities it might be worth looking into these other chemicals and flavorings.  Just a thought.  

[Jemima]

Hello, augustiny!

 

I can't add anything to the excellent advice you've gotten above, but I want to welcome you to the forum and encourage your great attitude.  FYI, it usually takes four full days for a change in dose to take effect, so you're right on schedule and will probably be fine at 9 mg.  Do hold there for some time after you feel stable though, as Rhi says.

 

Welcome to the forum.  You'll find lots of solid information and friendly support here.

[augustiny]

Oh gosh, Rhi, sorry I called you Phil.  It's the blind thing.  I know now and your advice is still very solid whether your name is Rhi or Phil.  

[Rhiannon]

Oh that's fine, not bothered, that's what I figured.

 

I think you can get the medicine compounded by a pharmacy using something that doesn't have sorbitol in it. You might look into that. I'm pretty sure there are other suspending media available that don't contain sorbitol, I've heard other people talk about that. If your doctor is willing to write for the liquid maybe she would be willing to write for a compounding pharmacy (which means they make up the solution for you.

 

Not all pharmacies do compounding, but there are some that do.

 

I make my own liquid, that's also a possibility, although your husband would need to do the measuring and mixing.

[augustiny]

Update: Day six and feeling a little bit worse today.  Just feel strange.  Almost like my whole body and mind are numb.  I just feel hyper sensitive to everything and a little bit shaky.  Feeling kind of agitated in a way I am really not used to feeling.  I am getting weird flares of goosebumps and tingles.  My mind feels kind of slow and I am having trouble with memory recall.  Still feels tolerable but it is making me a little bit anxious.  I thought the worst had come and that it would slowly get better.  Hoping I stabilize soon but also feeling really nervous knowing that some people take so long to feel normal again after a drop.  It's really hard with the first drop because you just don't know what to expect.  You have no idea what your pattern is.  I know its only been six days and I shouldn't be worried but I just am feeling that way today.  Having those negative voices creep up on me that I have made a horrible mistake and I am never going to be able to get off.  Trying to stay positive, 

[Altostrata]

Welcome, Augustiny.

 

Have you read our citalopram tapering topic http://survivingantidepressants.org/index.php?/topic/2023-tips-for-tapering-off-celexa-citalopram/

 

If you are sensitive to additives in the citalopram liquid, you can get a liquid compounded at a pharmacy, or you can make a liquid yourself with water.

 

Or, you can get capsules compounded into custom dosages from a compounding pharmacy.

 

You will need a prescription from a doctor for each compounded drug.

[Rhiannon]

Yes, those voices are annoying!

 

You haven't made a horrible mistake. If you find after a couple of weeks that your symptoms are just intolerable and you don't feel you can ride them out, you can updose to 9.5.  But remember you are still taking 9 mg. There is a floor under you. You are tapering, which you haven't tried before. This time is different.

 

My best guess is that it will be rocky but within about two months you'll be feeling much better and then you can start thinking about how to make your next cut (which I would recommend be smaller than 10%).

 

This is how we learn to taper and what our bodies can handle, by experience. Your body is the expert. 

 

I know it's scary, but you're doing it right this time and I think you're going to be okay. You can definitely get off these meds if you take it slowly enough--I was on ADs for 20 years and I'm down from 10 mg citalopram to less than 1 mg, doing just fine (doing very well actually), and I'm old and have an old brain. 

 

You just have to be willing to go slowly. And you are. So you can do it.

[bubble]

What helped me with those voices was reading about neuroemotions: http://survivingantidepressants.org/index.php?/topic/137-neuro-emotion/

 

And also coming here to read that it is normal to feel up and down. My situation was different in that I discontinued my medication but after I reinstated although I didn't feel well I saw little distinct signs of improvement and that gave me strength. Also I would read what Rhi wrote even to other people.

 

Still I hope this wave passes soon.

[tezza]

Hi augustiny,

 

I'm sorry about your misdiagnosis! I will be praying for your vision! Bless your heart!

 

I can't add anything to the wonderful advice you've been given but wanted to welcome you to the group and say hello.

 

[augustiny]

Rhi, Alto, Tezza, Bubble, 

 

Seriously, thank you so much.  I can't even tell you how much it means to me that you took 5 minutes out of your day to write to me.  It makes me feel like I can't wait until I am further into this process so I am more informed and can do this same thing for other people.  There are literally tears streaming down my face right now at how people who do not even know me could take the time to care and reach out.  I am having a HORRIBLE day.  You completely alleviated some of those feelings for me with just that tiny act of kindness though.  Bubble THANK YOU SO MUCH FOR POINTING ME TO THE NEURO-EMOTIONS PAGE.  I had not seen it before nor have I ever heard of neuro-emotions.   Seriously, you may have just saved my taper and much much heartache.     I have been reading through and am stunned by how much I am seeing my experience reflected.  I have never had voices in my head before and they are so strong I thought I was going off the deep end.  There not voices like I think people with schizophrenia experience but rather its like my own voice telling me terrible, horrific things about myself.  I feel such an insane amount of relief to read about neuro-emotions.  I feel like it just became so much easier to tell those voices to shut up.  Thank you so much.  

[bubble]

Dear Augustiny,

 

I'm so very happy we were able to ease your suffering. We have all been through what you are going through so there is nothing nicer than to see that what we have learnt through suffering can help someone else.

 

This site contains an amazing wealth of information to help us cope with what we are going through. After I abruptly discontinued my medication and while waiting for my CNS to recover after reinstating, I was so unwell that I could hardly do anything else for a long time except for reading things here.

 

Another very important thread that helped me survive those difficult months was this one about windows and waves pattern of recovery. http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-recovery/

 

I'm hoping for a nice window for you soon.

 

big hug,

bubble

 

PS What Rhi wrote also helped me a lot to understand what was happening for teh first time after trying to come off for so many times

 

Rhi on how drugs change our brains/regowing a new brain through tapering

 

A lot of people, including healthcare practitioners; in fact, I guess, most people-- are operating from entirely the wrong paradigm, or way of thinking, about these meds. They're thinking of them like aspirin--as something that has an effect when it's in your system, and then when it gets out of your system the effect goes away.

That's not what happens with medications that alter neurotransmitter function, we are learning.

What happens when you change the chemistry of the brain is, the brain adjusts its chemistry and structure to try to return to homeostasis, or biochemical and functional balance. It tries to restabilize the chemistry. 

For example: SSRI antidepressants work as "serotonin reuptake inhibitors." That is, they cause serotonin to remain in the space between neurons, rather than being taken back up into the cells to be re-used, like it would be in a normal healthy nondrugged brain.

So the brain, which wants to re-establish normal signaling and function, adapts to the higher level of serotonin between neurons (in the "synapse", the space between neurons where signals get passed along). It does this by removing serotonin receptors, so that the signal is reduced and changed to something closer to normal. It also decreases the amount of serotonin it produces overall. 

To do that, genes have to be turned on and off; new proteins have to be made; whole cascades of chemical reactions have to be changed, which means turning on and off OTHER genes; cells are destroyed, new cells are made; in other words, a complex physiologic remodeling takes place. This takes place over time. The brain does not grow and change rapidly. 

This is a vast oversimplification of the amount of adaptation that takes place in the brain when we change its normal chemistry, but that's the principle.

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay.

When the drug is removed, the remodeling process has to take place in reverse.

SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. 

It's a matter of, as I describe it, having to grow a new brain. 

I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long. 

With multiple drugs and a history of drug changes and cold turkeys, all of this becomes even more complicated. And if a person is started on these kinds of drugs at an early age before the brain has ever completely established normal mature functioning--well, it can't be good. (All of which is why I recommend an extremely slow taper particularly to anyone with a multiple drug history, a history of many years on meds, a history of past cold turkeys or frequent med changes, and a history of being put on drugs at a young age.)

This isn't intended to scare people, but hopefully to give you some idea of what's happening, and to help you respect and understand the process so you can work with it; ALSO, because you are likely to encounter many, many people who still believe these drugs work kind of like aspirin, or a glass of wine, and all you need to do is stop and get it out of your system. 

Now you can explain to them that no, getting it out of your system is not the issue; the issue is, you need to regrow or at least remodel your brain. This is a long, slow, very poorly understood process, and it needs to be respected. 

[augustiny]

Day 9 Update:  Just trying to give updates through this in case somewhere out there is needing to read them.  I noticed that a lot of the people on this site come to it after they have tried to CT or are in crisis from too large of a taper.  This is an incredibly important space for people whose experience is that but that is not my experience so I just wanted to give updates in case someone out there shares my experience and is looking for information.  My experience being that I was stable on a medication for a long time and then did a 1mg drop from 10mg to 9mg.  So day 9 update after my first initial drop.  The first 8 days on the new dose were really hard.  I felt pretty awful.  Dizzy, nauseated, diarrhea, numb face, skin tingles, REALLY strong neuro-emotions.  Two nights ago it sort of peaked and lasted into yesterday.  I definitely reached the "holy **** I am going to die and this is never going to get better" moment.  Slept well last night and woke up this morning and actually did feel slightly better.  Still dizzy and numb face but my stomach feels better.  It seems that my mind has calmed down a bit and I feel a lot more clear.  After a week of really feeling like my life might be over this is a huge relief.  Now, I am not naive enough to think that this means I am completely stabilized and I am not going to have anymore issues but I will say that it is a huge relief to have this window and leads me to believe that my brain is starting to stabilize.  I even went for a two mile walk this morning which is huge compared to how I was feeling two nights ago.  Hoping to continue to hold here and not even considering another drop until at least September.  Anyway, if someone is out there struggling today who feels like they can relate to my experience and reads this I want you to know that there is a window coming.  You will stabilize....or at least start to.  

[Rhiannon]

Yay for windows! It's a good sign that you've had one so soon. Don't be discouraged if it closes, they come and go, that's normal. But they come more often and last longer and after a while you realize you're feeling pretty good most of the time. You're going to do fine.