H202: could really do with some advice

[H202]

Hi there,

I was really hoping I could get some advice as I seem to be in a bit of a stuck situation.

So I had been of citalopram for 12 years before coming off it completely after a period of reducing my dose for a few months back in 2018. What followed after that was a horrendous 10 months which myself and the doctors seemed to have no idea what was wrong with me.  It was the most terrifying months of my life. In January 2019 I very reluctantly started to retake citalopram, my doctor advised starting at 10mg but I started on less than 4mg, cutting and weighing the tablet. I reacted pretty badly to restarting the dose but out of utter desperation continued taking it and it did help ease some of the worst of the withdrawal effects after a few months. I tried taking the liquid form of the drug which seemed to instantly create an allergic type of reaction so went back to the tablet. 

Since 2019 I have continued taking my tiny dose of Citalopram at the same time very day. I react to the tablet often, suffering a burning sensation, bad leg pain, agitation and sometimes really bad itching but have been gradually reducing my dose. 

Over the last few months my withdrawal symptoms have been at their best and I am now taking 0.22 mg  every night at 10pm. The problem I am finding is that my reaction to the tablet is getting worse and I have just spent the last 3 weeks reacting pretty much every night. I gave in last night and took a 5mg antihistamine which stopped the reaction and allowed me to get a nights sleep, the doctor says I should just take them all the time but Im worried this will somehow make my withdrawal even worse. I really want to stop this drug because frankly im really tired of taking something that make me feel so horrible every night but at the same time I am terrified at stopping or changing medication in fear of going back into the same type of hell I was living in when I was in my first withdrawal.  

I would really appreciate any advice as I don't really know where to go from here and constantly feel like I am trapped between feeling really bad taking the medication but knowing it can be much worse if I stop it.  sorry for the long post.

Thanks

[Gridley]

Welcome to SA, H202.

 

What happened in 2018 was that you tapered too fast, resulting in withdrawal symptoms.  Doctors know nothing about withdrawal and don't believe it exists.

 

What is withdrawal syndrome.

 

Brain Remodelling 

 

When we take psychiatric medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

Then in 2019, when you reinstated, it appears you had an adverse reaction to the drug.  What once worked for you now became like poison to your system. The cause of this could have been the too-fast taper, reinstating at too high a dose or a combination, resulting in a general sensitization of your system which makes you react so strongly to the drug. 

 

What are your current symptoms?  If insomnia is a significant problem, you might do better moving your dose to the morning.  I would move your dose back one hour every day until you arrive at a morning time that's convenient to you.

 

I also need to know how you are measuring your doses. 

 

Congratulations on getting down to 0.22mg.  At what rate did you taper from 4mg to your current 0.22mg?

 

You are correct in your conclusion that stopping now could make matters worse.  Generally we recommend tapering by no more than 10% of your current dose every four weeks but, depending on how you're measuring your doses that might not be possible at this low dose.  Once I know how you're measuring your doses, I can better advise you on your taper.  It would be good to get down to 0.05mg before you jump to zero.  We would not recommend changing drugs.

 

Brassmonkey, one of our moderators, is writing a post on the endgame taper, but this earlier draft contains information that might be helpful to you about tapering at the really low doses.

 

Ollie, Ollie Oxen Free, Managing The Endgame Taper - Tapering ...

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction topic, where you can answer my questions, ask your own questions and connect with other members.  We're glad you found your way here.

 

 

 

 

 

 

 

Edited May 30, 2020 by Gridley

[H202]

Hiya, thank you very much for replying.

 

My mother weighs the tablet on jewellery scales as sometimes even cutting it can set off my reaction. they seem quite good and I definitely know when my dose has changed. I cut the dose down quite abit from the 4mg when i first started to a more tolerable dose but since then I have just gone down by 0.01 mg every few months, sometimes doing alternate days at the lower dose to start with and then stretching it out to every 3rd day etc, its been a rather bumpy ride 😩! 

 

Some nights within seconds of taking the tablet I get a heated burning sensation in my face. I often start to feel drowsy and then the leg pain sets in. If I am lucky I will often fall asleep for about an hour or two before being woken to really bad leg pain,  leg spasms, burning skin sensation and sometimes all over itching. at about 5am the real agitation and dread like feeling then hits and its then a case of waiting during the day to start feeling better. I always tend to feel better by the evening so only get a few good hours before I take the tablet and start the process again, it does now seem the lower the dose I go the worse the reaction. Do you think its safe to continue taking it even when I react like this and do you think it would be a problem to take an antihistamine more regularly, they just seem to stop the reaction pretty much all together and it would be nice not to dread every night or morning if i change the time.

 

I have tried supplements like magnesium but sadly could not tolerate them, I am now really sensitive to most medications and a lot of food. 

 

I know everybody is different and no one really knows how each person will respond when they stop taking medications but do you think there is any chance that when I do finally stop that this time around might not be quite as bad? I have only just started to be able to eat slightly more normally without awful reflux and rotate my head without chronic neck and eye problems and its scary to think that by stopping I will just start the process all over again. 

 

Any tapering advice would be great, I was hoping I could drop down from the liquid when I got to this stage but since i now see to react to that much worse it doesn't seem any option.

Oh and you are very right, the Doctors have no idea and no belief in my situation at all so it seems you just have to go it alone! 

 

 

[Altostrata]

Welcome, H2.

 

Obviously, you have long been allergic to citalopram, with your allergy getting worse.

 

You're in a difficult situation. One thing you might do is substitute 0.20mg Prozac, which comes in a liquid form by prescription.

 

Substitution, though, has its own risks. As you're taking a very low dose, you might stop citalopram. It is possible withdrawal symptoms, if any would not be worse than the adverse reaction you're getting. If you get withdrawal symptoms, a little Prozac might stop them. You might find it easier to tolerate and taper.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[H202]

Hi, thank you for your reply.

I know its silly but I would be very nervous to change over to another drug as my reactions to now most medications seem quite extreme. 

 

The problem I have is that I do now get some good days and times despite my bad reaction to the citalopram and my concern would be that by stopping I wouldn't get any. As strange as it sounds my reaction to the citalopram is often worse at different times throughout the month, depending on what my hormones are doing. The doctors have suggested adding in a birth control and get frustrated that I wont take any medications but everything I do try and take seems to make things a whole lot worse so at the moment apart from the odd paracetamol and low dose antihistamine every few weeks I do not take anything else.   The worst of my withdrawal symptoms started about 4 or 5 months after I stopped the last time, If that happened again I really don't think I would be able to reinstate again to help stop the worse of the symptoms.

 

If I did try the prozac route would I need to start it alongside reducing the citalopram or just do a clean swap? 

Or if for now I did try and hold out for a bit longer on the citalopram do you think reducing my dose further will help prevent the severity of the next withdrawal?  I still get symptoms when I drop doses. 

 

Sorry for keep asking but do you think despite going back onto the citalopram last time that my body has still been recovering from going from the 20mg even while taking the small doses and therefore  maybe this time it wont have such a shock when I stop? For the last few years even while taking the citalopram I have still suffered alot of really unpleasant withdrawal symptoms and have pretty much been stuck at home just trying to cope with the daily problems but have been told I couldn't be withdrawing as I had started retaking it.  My constant reluctance to stop taking the citalopram is that I will almost have to restart the whole process of withdrawal again and get really annoyed at myself for agreeing to start taking it again to only prolong the situation but at the time I was desperate.

 

Sorry for all the questions. I would love to just stop this medication and not have to suffer the reaction and my doctors cant believe I seem stupid enough to keep taking it but I would rather suffer this process for a longer period than put myself and my family through the nightmare of another bad withdrawal. I just want to try and get it as right as I can this time round. 

 

Thanks for your previous suggestions, its nice to know there are maybe options to help.

 

 

[H202]

Hi, 

I have now been living through this process for nearly 5 years and am not really not sure what else to do. I was on citalopram for 12 years and did a fast taper from 20mg back in 2018. I then spent 10 months completely off of the drug, in that time I suffered every symptom going, one of my worst being akathisia. I reinstated the drug at a small dose (not small enough) in 2019 and instantly got a severe reaction. However,  I continued and have continued to take the drug while slowly tapering. It took a long time for any of my symptoms to improve and after 2 years some of the really disabling symptoms did lesson and I did start to get periods of having windows and times that I didnt react to the medication. I am now down to 0.014g and things have started to get pretty bad. I still get akathisia and I am still suffering badly after every drop. The biggest problem I now seem to have is that my reaction to the drug is worse the lower I go. I am now getting burning skin sensation, severe agitation, nausea, upset stomach, feelings of brain changing, desperation, panic, from taking the tablet and I dont know what to do. My goal was to get to 0.05 before stopping, I dont know how I am going to get there. I dont want to just stop at this dose because the withdrawal effects are still not good and I fear they are going to get really bad if I stop completely at this dose but I also know I cant continue taking something that is making me this unwell every single day. I don't think risking another medication is an option as I am highly sensitive to virtually every medication, food and supplement. The only thing that helps is an antihistamine but I only try to use them occasionally as I dont want them to affect my withdrawal. Has anyone else suffered such bad reactions from the medication and managed to continue withdrawing? Any advise would be appreciated. Thanks 

[manymoretodays]

Welcome H202,

I got you merged back here to your topic and looks like you've been given some advice already right here in your topic.

And we'd prefer that you keep from starting new topics, very much like your Introduction topic elsewhere now.

I'm hoping maybe other members may relate right here if they have had similar issues with adverse effects and then while withdrawing.

 

On 6/1/2020 at 3:34 AM, H202 said:

If I did try the prozac route would I need to start it alongside reducing the citalopram or just do a clean swap? 

 

On 5/30/2020 at 2:55 PM, Altostrata said:

You're in a difficult situation. One thing you might do is substitute 0.20mg Prozac, which comes in a liquid form by prescription.

 

Substitution, though, has its own risks. As you're taking a very low dose, you might stop citalopram. It is possible withdrawal symptoms, if any would not be worse than the adverse reaction you're getting. If you get withdrawal symptoms, a little Prozac might stop them. You might find it easier to tolerate and taper.

 

Looks like your questions in your post after Alto's were answered.  That you might stop citalopram first(as you are on such a low dose) and then if you did get worsening withdrawal symptoms you could start a very low dose of Prozac.  Or even do that the day after stopping citalopram.     So that would be a fairly clean swap. 

I might wait a few days to a week after stopping citalopram if it was me......just to see......if it really was worse or about the same.  You might feel more secure just getting some Prozac in a form where you could get that low of a dose(liquid might be best or making your own liquid).  That's up to you.

I'll give you the Prozac tapering link now so you can find ways to get a 0.20 mg dose should you opt for this.

Tips for tapering off Prozac(fluoxetine)

 

So sorry it's been such a long haul with symptoms and allergic adverse reactions to the citalopram.  Maybe you'll be surprised when going off it completely that some of the symptoms lift given time away from citalopram.  That would be my hope for you.  And then that little bit of Prozac may help in time with any withdrawal.

 

Okay.  Post here for now.

 

Love, peace, healing, and growth,

mmt

 

Questions about how to do a signature?  Here's the link again to that.  And that will be helpful to us all.  For when you have future questions.

 

[Altostrata]

Hello, @H202

 

On 4/16/2023 at 1:48 PM, H202 said:

I am now down to 0.014g and things have started to get pretty bad. I still get akathisia and I am still suffering badly after every drop. The biggest problem I now seem to have is that my reaction to the drug is worse the lower I go. I am now getting burning skin sensation, severe agitation, nausea, upset stomach, feelings of brain changing, desperation, panic, from taking the tablet and I dont know what to do.

 

When did the burning skin sensation, nausea, etc. start?

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[H202]

Hi, thank you for your reply.

It started on the 28th March and I am now getting a reaction every day to different varying degrees. What I find difficult is no day is really ever the same in how I react to the drug or what symptoms of withdrawal I get, so I am struggling to know which is more reaction and which is withdrawal and if I should try and speed up my taper or hold and hope things settle?

 

When I take the tablet I can often get a pretty quick reaction. The burning skin starts, the agitation and panic begins, I can almost feel it hitting my system. It can then at the same time start to calm my brain.

 

My average day at the moment normally goes..

 

8am-Wake up to panic, nausea, upset stomach, burning skin

Pacing, body jerks, wanting to move limbs throughout morning, not able to stop moving or being stuck in same place just zoned out.

2pm- things improve alittle

4pm- burning skin starts to ease

withdrawal symptoms start. yesterday an overwhelming feeling of akathisia started in the afternoon

6.30pm- take tablet and reaction starts. 

Try to manage physical symptoms through the night, despite the agitation in legs and burning feeling, Its the only time I feel calm enough to watch TV and can have some sleep.

By the morning the bad symptoms are all back again and im lucky if they go off so I can have an hours break in the afternoon.

 

My GP just thinks I should stop taking the citalopram because they dont believe it would be having any effect. But I am still at 1.7mg and know it's controlling some of the Akathisia that Im now getting and keeping alot of the withdrawal symptoms at bay. I also feel that taking it is giving me symptoms of Akathisia and all im trying to prevent is having to live in a constant state of Akathisia. Im so sensitive to every tiny drop that I make, that however hard I try to speed things up, my body doesnt like it. I appear to be in abit of a stuck situation. 

 

 

 

 

 

[Altostrata]

 Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

45 minutes ago, H202 said:

6.30pm- take tablet and reaction starts. 

 

What dosage tablet, what drug? Please describe the reaction, how long does it last?

[H202]

I think i've added to my signature now. 

 

Im on citalopram, have only ever been on citalopram and am now down to a weight of 0.014g which makes it that im at about 1.7 mg. It's a 10mg tablet that im cutting.

 

The reaction alters, depending on sometimes what ive eaten before and where I am in my hormone cycle but at the moment and for the last 3 weeks, is consistently making me feel very agitated, restless feet and legs, burning skin, nausea, upset stomach, itching skin, especially on my face and head, pain in the joints of my hands and some nights it gives me pretty bad brain pain/zaps. The reaction can last a few hours after I take it. Can be delayed and start a few hours later or start straight away and not stop until 4pm the following day, which appears to be what is happening the most at the moment. I am thinking that the mass anxiety, burning skin and inability to sit still, with jolting body movements, that I wake up to, is the reaction to the drug at the moment, rather than withdrawal symptoms. The reaction seems to go in stages through the hours.  I am just really hoping it settles down again because I would ideally like to get lower in my dose before I stop completely. 

 

 

[Altostrata]

On 5/30/2020 at 9:55 PM, Altostrata said:

....

Obviously, you have long been allergic to citalopram, with your allergy getting worse.

 

You're in a difficult situation. One thing you might do is substitute 0.20mg Prozac, which comes in a liquid form by prescription.

 

Substitution, though, has its own risks. As you're taking a very low dose, you might stop citalopram. It is possible withdrawal symptoms, if any would not be worse than the adverse reaction you're getting. If you get withdrawal symptoms, a little Prozac might stop them. You might find it easier to tolerate and taper.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

We had this discussion almost 3 years ago. Why did you not stop citalopram, possibly with a Prozac bridge, then?

 

[H202]

because my withdrawal effects are still pretty horrendous, even when I drop minimal amounts and I don't seem to tolerate other drugs now. If i'm honest I am utterly terrified to go back to being off completely as I don't feel I will live through a withdrawal like I had before. I am aware things are pretty bad as they are though and I need to find the guts to change things.

 

[manymoretodays]

Hi H202,  And okay you did your signature!  Good.  However,  I thought on my last look at your topic that you were on less than 1 mg dose of citalopram.  Please please to be clear and avoid confusion report your dose not the weight of your drug.  Often BIG difference.  Report 1.7 mg as your dose.  I see in your post that weighs .014 g.  Fix it in your signature.  Just the dose please.  Thank you.  And oh man....so sorry symptoms continue so prevalent.