AlanC: one year on from stopping Celexa / citalopram too quickly

[Onmyway]

Hi @AlanC, 

how have you been lately? How did the conversation go with the doctor? Would love to hear how things are going. 

Thinking of you, 
OMW

[AlanC]

It’s been a while so here’s an update:

 

Back in July I had a bad fall while out walking. A bout of dizziness that came on quite abruptly combined with brain zaps to make me lose my balance, unfortunately just as I was walking up a slope covered in loose stones, and I fell heavily onto my right side resulting in a massive black bruise on my hip and some minor cuts and scrapes on my right arm and both hands. The bruise was painful: for several weeks it’d wake me up at night if I rolled over onto it.

 

The whole thing left me feeling very down. Dizziness and brain zaps seem to be my particular manifestation of withdrawal: they started while I was still tapering the Citalopram, came back with a vengeance when the first wave hit (I needed a stick to walk outside) and have been with me to a greater or lesser degree ever since. But this was the first serious fall I’ve had as a result, and the fact that there was no quick way out - I had to walk another two miles to get back to my car while in quite a bit of pain - has left me reluctant to go out much again.

 

Since then some things have got better, some have got worse. On the plus side I’ve regained my ability to play the piano to a reasonable degree. I struggle with some of the more difficult music I used to be able to play, but it’s a relief to be able to play again because it’s something I enjoy very much. The migraine headaches continue to stay away so it does look like the Salmeterol inhaler was the cause. And since I’ve been carefully controlling my diet to avoid anything that triggers my asthma I haven’t had a single attack since stopping the Salmeterol.

 

On the minus side I now have sleep problems: I only get about two or three hours most nights. I go to bed at a consistent time, try to stay off the computer before bed time, etc. but it doesn’t seem to help, and the times I sleep are inconsistent: it might be 11pm to 2am one night, 5am to 7am the next. Another minus is anxiety: everything worries me to a terrible extent. Phone calls and letters make me panic. And the brain fog is back: I’m struggling to work (I’m a self-employed software developer) because I can’t concentrate, and I need to work to pay the bills. And, perhaps worst of all, there’s been some awful unpleasantness from my sister who was previously offering help. This all adds to the anxiety which is becoming unbearable. I try to use the mindfulness techniques I learned during my first bout of depression but the anxiety and fear are now so strong that they’re very hard to deal with.

 

On 23/10/21 I woke up in the early hours with my eyes feeling sore and scratchy. Looking in the mirror the whites were very red, so I washed them with some cold water and went back to bed. When I woke up in the morning both eyes were severely swollen: I couldn’t open my left eye at all and could barely see with my right eye. I couldn’t figure out any cause since I hadn’t been out of the house for three days prior to it happening and nothing else had changed from normal. I was given an antihistamine, Loratadine, to deal with what appeared to be an allergic reaction. It worked quickly, and I took it only for as long as it took my eyes to return to normal (23/10 to 28/10), but either it or whatever caused the reaction triggered a particularly bad wave that is still ongoing.

 

Christmas is coming and I’m dreading it. I’m invited to my brother’s on christmas day but I’m not sure I can deal with his hyperactive Border Collie puppy who gets wildly excited when he sees me. Then there’s my sister, who may choose to visit unannounced; in my present state I don’t feel able to deal with her, her husband, or her two large dogs that she will insist on bringing despite the fact they’re a trigger for my asthma.

[Rosetta]

Alan,

It looks like you could use some support.  The anxiety was my worst symptom.  Every holiday was very difficult.  I had anticipatory anxiety before each one.  The actual experience was always much less distressing than I expected.  However, the repeated realization that this was invariably true had no effect on my anxiety at all.  
 

The way I dealt with it was to have Epsom salts baths and using a heating pad.  Both had a calming effect on me.  Often, I had to use these to make it through the worst part of the day.

 

You may want to skip seeing your brother at Christmas and go instead at a time when your sister would not be able to crash the visit?  You could plan a nice trip for yourself or see friends, perhaps?

 

I hope you get a nice window soon.

 

Rosetta

[ChessieCat]

1 hour ago, Rosetta said:

You may want to skip seeing your brother at Christmas and go instead at a time when your sister would not be able to crash the visit?

 

I agree with Rosetta.

 

Christmas time can be a very stressful period even when we are feeling fairly reasonable.  It sounds like you are not coping very well at this time and you do need to look after yourself.

 

I understand that it can be a hard decision to make.  Sometimes we have to take a stand to look after ourselves first.  Others might not like it, but if it is what is best for you, then it might be better defer things until you are feeling better able to cope and/or the situation is more suitable for you to deal with.

[AlanC]

Rosetta, ChessieCat, thanks.

 

My sister isn't going to turn up on christmas day, so if I were to go to my brother's I'd just have to deal with Ollie the Border Collie who is very friendly and just wants to play non-stop. But in my present state he's likely going to be too much.

 

And in practice I'd far rather my brother was there if my sister does choose to visit between christmas and new year: she can't exactly start using me as a punch-bag in front of him and his wife and family.

 

I wish I knew what had gone wrong. My sister also suffers from depression so you might think she would understand. Unfortunately the reverse is true: she's becoming increasingly antagonistic towards me and, earlier this year, literally reduced me to tears while talking to her on the phone. Everything I say is a lie, every problem is my fault. Coming from someone who, after our Mum passed away, had expressed concern about me and offered help, this is very painful. And since she's my sister I have no defences against her.

 

Chessie, I think you're right. I need to step back. I just hope my sister doesn't turn up, unannounced, on my doorstep if she decides to visit my brother.

[ChessieCat]

1 hour ago, AlanC said:

if I were to go to my brother's I'd just have to deal with Ollie the Border Collie who is very friendly and just wants to play non-stop. But in my present state he's likely going to be too much.

 

Are you able to ask your brother to have the dog in a different area so that you aren't bombarded by him.  And if that is possible what you could do it have a limited time with the dog when  it suits you, or if  it suits you.  I do NOT mean tie the dog up, but just be contained so that you do not have to try to continually cope with him and be on continually alert.

 

1 hour ago, AlanC said:

I just hope my sister doesn't turn up, unannounced, on my doorstep if she decides to visit my brother.

 

You have to put yourself first.  I know it is easier said than done.  However, you have every right to not let her in to your house.  If it is unannounced, then it is very inconsiderate of her to do this.  Just have a short chat at the door, verandah, or go into the front yard with her and tell her that she did not pre-arrange the visit and that it is not a suitable time for her to visit.  It's easier if you have a dialogue pre-planned so you do not have to think on the spot.

 

The other option would be to suggest that you meet up at a local park for a short time.  Perhaps somewhere that she can let the dog/s run around.  That way you are able to leave when it suits you.  Or even a coffee shop.  And tell her that you will meet her there at a certain time so that she doesn't come inside and wait for you whilst you get ready.  If you know in advance that she is in the area you could make a few preparations just in case.

 

One thing I learned was that we can love our relatives but we do not necessarily like everything about them, just like non-relatives.  I hardly see my sister.  No issues, but we are just very different.  Even though I loved my mother, I realised only a few years before she died that she was not the sort of person that I would choose as a friend.  Just because we have a connection because of  blood and being brought up in the same household with the same parents doesn't mean that we have to like them and let them be domineering.  Generally, we wouldn't let non-relatives get away with what a relative might do.

[AlanC]

My brother came to visit today and has, hopefully, averted any problems. He and his wife will be visiting my sister over christmas when their daughter is at home to look after their puppy. He's not keen on having her two dogs in the house with his pup who's still somewhat nervous of strange dogs.

 

I can't imagine for a moment that my sister will drive 40 miles just to visit me; we've seen each other twice since our Mum passed away in 2013 and, if I didn't keep trying to talk to her, there wouldn't have been any contact between us at all.

 

I don't like burning bridges, especially since I don't have many left, but for this year, at least, I'm just going to quietly fade away.

[Onmyway]

Hi Alan,

nice to see you back on SA. It seems like your brain is working hard on the healing front. I am glad that the headaches are gone and that the dizziness has lessened and that you can now play the piano! 

 

Seems like your brain is now working on rebuilding the anxiety center and whatever part gets sleep back to normal. Have you ever seen the post below? It is explaining the various tasks of healing and what each one means in terms of symptoms. You are on your way. 

Glad the sister is not going to cause more unpleasantness for you. During parts of withdrawal I have had to 'ban' certain people from my life mostly by just not contacting them. Withdrawal makes us feel unsteady and we reach out to family but family is not always supportive or good for our mental health. Give yourself a break from your sister for the duration of withdrawal and once you are healed, you can deal with that relationship - repair it, let it go permanently, keep it at a distance. I call this mental hygiene - keep the mental germs and toxicities away. This is not to say that your sister is bad or toxic (I don't know her and it doesn't matter) but for now it is bothering your sensitized nerves and so no need to get more of her when in this sensitized state. 

 

You said you got scared when you fell over the summer and are not going out much. That is unfortunate as walking can be quite helpful (at least to me it has been). It can dissipate the extra cortisol and adrenaline from the anxiety that keeps flooding us. Can you walk in safer areas - i.e. populated streets or take a walking buddy with you. Not sure if you can handle people well at this point. Or can you try even walking on your street or even inside? 

 

I miss you here at SA, so pls come often and update us

 

Btw, what is your favorite thing to play on the piano? I have been partial to different types of music at different times during withdrawal. 

 

Hugs, 
OMW

 

Edited November 17, 2021 by Onmyway

[AlanC]

16 hours ago, Onmyway said:

I miss you here at SA, so pls come often and update us

 

Btw, what is your favorite thing to play on the piano? I have been partial to different types of music at different times during withdrawal. 

 

Hugs, 
OMW

 

 

Thanks OnMyWay.

 

I'm afraid this site is, increasingly, becoming very distressing to me. There is something I haven't talked about, that I may not even be able to talk about on a public forum, that is now having a huge negative effect on my life. I'm going to try and write about it, because it is relevant to my case history, then wait a bit before actually posting to see how I feel.

 

On the far less painful subject of music:

 

It's not just piano. I actually play a Yamaha Montage because I enjoy music written for other instruments, such as the harpsichord, as well, and I like having a wide range of sounds.

 

My current repertoire is a fraction of what it was:

Beethoven: Moonlight Sonata (1st movement, can’t manage the rest)

François Couperin: Les Barricades Mystérieuses
Thomas Arne: Gigue from the Sonata in G
Scott Joplin: Maple Leaf Rag and The Entertainer (struggling with this one)
Isaac Albeniz: Cordoba (extremely difficult at best, can’t get much past the slow initial section now)

 

I used to be able to play several other Scott Joplin rags but have forgotten most of them. I need to learn them again - I really like Scott Joplin’s music.

 

The other thing I’d do would be to take a piece of orchestral music and record myself playing each part, one at a time, to build up the whole piece. Very time consuming, and I haven’t really got the will to do it any more. But this is me playing the Méditation from Thaïs by Jules Massenet on the DSI Prophet 12 synthesizer back in 2014: https://soundcloud.com/alanc3-1/meditation
 

[Onmyway]

Wow, the Meditations piece is beautiful! Well done 👏

Please don't feel pressured to either be here or post about the details of the story. I just like having you here as I remember we were in the same place when I just started and I got lots of support and reassurance from you. 

 

Hope things continue to improve for both of us!
OMW

[AlanC]

So I've got an infection in the eustachian tube of my left ear. And I've been told that if I start bleeding from the ear or if the swelling pushes it forwards (ugh!) I'm to go to A&E immediately.

 

I've been prescribed Amoxicillin 500mg three times a day for five days, Otomize ear spray (Dexamethasone and Neomycin) three times a day for a week, and Beclometasone nasal spray twice a day for a fortnight.

 

It's going to be "interesting" to see what effect that little lot has on the withdrawal. I've had 24 hours of it so far: it's definitely upped the dizziness, and the Beclometasone seems to be giving me a headache, but there doesn't seem to have been any immediate adverse reaction of the type some other people on the forum have suffered.

 

Fingers crossed...

[ChessieCat]

6 hours ago, AlanC said:

there doesn't seem to have been any immediate adverse reaction

 

That's good.

 

Please continue to let us know how you are.

[AlanC]

I’ve come to the end of the amoxicillin and have two more days of the dexamethasone/neomycin spray and nine more days of the beclometasone spray.

 

I started to feel noticeably down yesterday, and today I’m definitely depressed. It’s not a revival of the discontinuation symptoms, it’s depression. I guess this is the effect of the two corticosteroids since both are known to cause depression.

 

The apparent reason for the use of the beclometasone is that it helps keep the eustachian tube open, and this is needed because the antibiotic can increase the fluid production in the inner ear as it kills the infection. So I seem to be caught between a rock and a hard place: keep using the beclometasone so the eustachian tube problems don’t get worse and try to cope with the depression, or risk making the ear infection worse.

 

The beclometasone is definitely working. The eustachian tube seemed completely blocked before I started using it, my ear wouldn’t “pop” at all, but it will now, perhaps three quarters of the time. This has given me a lot of relief.

 

For the moment I’m going to keep the beclometasone down to the smallest suggested dose and hope it continues to keep the eustachian tube open, and try to use the mindfulness techniques I learned during my first bout of depression to cope.

 

I just hope this doesn’t continue for too long.

[ChessieCat]

5 hours ago, AlanC said:

and try to use the mindfulness techniques I learned during my first bout of depression to cope.

 

👍

[Onmyway]

Hi @AlanC just checking how you are doing and whether the infection is getting better. 

Hope you are recovering well. We are thinking of you, 
OMW

[AlanC]

Unfortunately the infection in my ear has returned and is now affecting the ear canal. I visited the local Urgent Care Centre today and was told by the doctor that the inside of my ear was red and swollen to the point she couldn’t see the eardrum. I’ve been re-prescribed the steroid / antibiotic ear spray and the steroid nasal spray.

 

The visit was extremely hard on me. Something I haven’t mentioned here in the past is that I underwent two separate pieces of invasive medical treatment in my childhood that traumatised me and left me with a severe phobia of hospitals and doctors. Last night the certain knowledge that I was going to have to arrange the visit and go through with it led to an episode of self harm.

[mva96]

Hey Alan, been a while since we last caught up. 
 

sorry to hear about your infection and all the other unpleasant memories that has brought back, I can really empathise with you there, my own trauma has made this process really challenging. 
 

hope you didn’t self harm too badly, withdrawal takes it’s toll on us and it’s easy to spiral when even more stressors are added. I’m routing for you and hope the infection clears up quickly 

[AlanC]

6 hours ago, mva96 said:

Hey Alan, been a while since we last caught up. 
 

sorry to hear about your infection and all the other unpleasant memories that has brought back, I can really empathise with you there, my own trauma has made this process really challenging. 
 

hope you didn’t self harm too badly, withdrawal takes it’s toll on us and it’s easy to spiral when even more stressors are added. I’m routing for you and hope the infection clears up quickly 

 

Really sorry to see you've been having such a rough time. That bit about the facial condition is awful and the fact your uncle, as a neurologist, has seen it before is frightening. Wretched SSRI's - is there no end to the ways they can mess people up? I really hope you recover soon.

 

I'm OK. Nothing worse than some scratches to my face that bled a bit. I look pretty awful right now but it'll heal without any damage.

 

Fortunately the hospital visit went well: the clinician I saw was extremely kind, sympathetic and reassuring.

 

Unfortunately I started to suffer pain in my right ear as well yesterday evening. It seems the infection may have spread to that ear too, so I now have to use the spray in both ears and keep going with the whole regime for another week.

[AlanC]

Since my last post things have gone very bad.

 

After restarting the steroid / antibiotic ear spray (Dexamethasone, Neomycin, Acetic acid) the problems in my left ear got worse. I also started to experience pain in my right ear; without being examined I was told to use the spray in that ear too, but doing so resulted in an identical bad reaction. At this point I’d been moved to a new GPs practice and saw one of their doctors. She told me to stop the spray immediately and prescribed some steroid/antibiotic drops (Betametasone, Neomycin) to replace it. I had to wait a day for the drops to arrive and in that time my ears started to recover. But when I started the new drops the problems returned: I got a stinging sensation when I used them and, after about a day, severe irritation developed in both ears. I went back to the GP and told her about the problems, commenting that the only thing in common between the spray and the drops was Neomycin. She examined my ears and said the left ear, where the problems started, was still badly inflamed but the right ear was only slightly so. She suspected a sensitivity reaction and prescribed a steroid ear drop (Betametasone) to help, to be used as needed. As soon as I started these drops I got a bad reaction again: stinging when I put them in and severe irritation after about an hour. I was also feeling very weird: weak, dizzy and confused, and I couldn’t sleep at all because of the pain in my ears. I took my temperature, but it was normal; I used a blood pressure monitor and found I was at 148/90. At this point I had a panic attack, although I didn’t realise it at the time, which sent my blood pressure even higher. I tried to get an appointment with the GPs but could only get a telephone consultation with a different doctor. He took an authoritarian line: I was having a panic attack, I must not continue to use the blood pressure monitor, 148/90 was caused by the steroids and nothing to worry about, and I had to continue the treatment exactly as prescribed.

 

Since then I’ve been in a terrible state. The steroid drops were to be used “as required” so I decided I wasn’t going to touch them because of the bad reaction. I checked my blood pressure two days later and found it’d gone down to 136/80, but I keep getting periods where my resting heart rate goes up to about 100 when I’m sitting doing nothing. I tried going out for a walk today but that raised my heart rate even more: I could feel my heart pounding very rapidly. The reaction in my ears keeps flaring up: first my right ear, then my left ear. My left ear is now burning continuously. I have no fever and there’s no visible swelling but the inside of the ear is painfully sore, the area surrounding it is uncomfortable to pressure (such as wearing headphones) and the lymph glands in my neck hurt. I feel weak, dizzy, extremely fatigued and have no appetite. I guess this is steroid withdrawal, and it is absolute, pure hell.

 

I don’t know what to do. I’m pretty much incapacitated and have nobody to help me since my brother is visiting his family over Christmas and there’s no-one else. I’m deadly scared that calling NHS 111 or going back to the GPs when they re-open on 29/12 will just result in another case of the doctor refusing to listen to something that doesn’t fit with their idea of what could be wrong, and will inevitably involve more steroid treatment that could make the apparent sensitivity reaction worse, or even push me into a hypertensive crisis. But I need help; I can’t go on like this.

[ChessieCat]

Unfortunately we are not able help with general medical issues.  The staff are not medical professionals, but peers helping members to get off their psychiatric drugs.

 

But I will give you some of my personal thoughts.

 

You have been having this issue for almost 1 month or possibly more.  Have you researched the side effects (not interactions) of the prescriptions you have been given.  It is very "interesting" that the same issue/s happened with the other ear.

 

If it was me I would be wanting to see an ear specialist after having these issues for so long and not getting any improvement (and actually a worsening due to the treatment), but I imagine that it would take some time to see one.  You might consider going to the emergency section of the hospital.  At least there they would have access to an ear specialist if needed.

 

I know street129 had cataract surgery and had a bad reaction to the eye drops (steroid and antibiotic) that they had for that.

[AlanC]

Thank you Chessie.

 

I realise I can't expect the staff here to advise on general medical issues, and I've been searching through sites such as drugs.com, nhs.uk and bnf.nice.org.uk for the possible side effects of the drugs I've been given, and for descriptions of what the symptoms of corticosteroid withdrawal are.

 

The ear spray and both sets of drops contain warnings that they shouldn't be used for more than a week or there's a risk of their losing effectiveness or producing bad reactions. I've effectively been given them for a fortnight. The two corticosteroids, dexamethasone and betamethasone, are among the most powerful of their kind and sensitivity reactions to them are classified as common side effects, as are some of my other symptoms such as the high blood pressure. The rest of the symptoms are typical of corticosteroid withdrawal.

 

The doctor I first saw at my new GPs practice considered a sensitivity reaction was definitely possible since I have no temperature, no swelling round my ears, and there has never been any discharge from the ear where the infection started. She did think the cause of the reaction was probably the antibiotic, neomycin, since allergies to it are fairly common and it was the one common factor between the spray and the first set of drops.

 

My own guess, now, is that the reaction is down to the corticosteroids. The symptoms match a combination of a sensitivity reaction and withdrawal. There's nothing I can do about the withdrawal given the sensitivity reaction is so bad - I'll just have to cope with it until it ends. The usual duration given for this is one to two weeks for someone who has been on the drugs for a short period.

 

The only good thing is that the burning in my left ear, where the problems started, has lessened today; hopefully it won't flare up again as it has done previously. It's hard to be certain whether there's been any effect on the antidepressant withdrawal since the symptoms from the corticosteroids are so bad at the moment, but I don't believe anything I've been given has any serotonergic effect.

[ChessieCat]

6 hours ago, AlanC said:

I realise I can't expect the staff here to advise on general medical issues

 

We do need to state this as a matter of course, which I think you understand.

 

6 hours ago, AlanC said:

I've been searching through sites such as drugs.com, nhs.uk and bnf.nice.org.uk for the possible side effects of the drugs I've been given, and for descriptions of what the symptoms of corticosteroid withdrawal are.

 

I'm glad to see that you have been doing your own research.

 

6 hours ago, AlanC said:

The only good thing is that the burning in my left ear, where the problems started, has lessened today; hopefully it won't flare up again as it has done previously.

 

Yes, I hope so too.

[Onmyway]

Hi @AlanC, how are you recovering from the ear infection?

Hope you are doing well, 
OMW

[AlanC]

Unfortunately the problems caused by the ear drops are getting worse. I was seen by another GP a week ago who examined my ears and said there was no visible swelling and that the skin appeared normal. She suggested that I was suffering a sensitivity reaction to all the different drugs that have been used and was reluctant to prescribe anything to deal with the pain because of the possibility of worsening the problem. She told me to continue to use the beclometasone nasal spray, and that if things didn't improve by the end of January I'd need to be seen by an ENT specialist.

 

The following day I had to stop the nasal spray for a while because it started to cause nosebleeds and I felt somewhat better as a result. When I restarted it yesterday I got an immediate, stinging sensation and a worsening of the sensitivity reaction a couple of hours later, although it passed off overnight. Using the spray again today caused a far more severe reaction: I'm now in a lot of pain. And unfortunately there has also been a significant increase in the withdrawal symptoms: I've had a bad bout of brain zaps, am very dizzy and periodically start to feel cold despite the fact it's very warm in the room.

 

I'm going to have to talk to the GPs again because the amount of pain I'm in at the moment is wearing me down.

[Onmyway]

Hi @AlanC, 

how have you been? Have the ear issues resolved? I hope so!

Just checking on you

[OldDodgy]

@AlanC

Hi

if it is any help I can say that I have had foul earache which is a stabbing deep in both ears for several hours a day now and on and off since stopping three Meds. The Gp looked in July 2021 and insisted it was ok with no evidence of raised intracranial pressure to cause this. 
however the pain is now so bad I fear she will offer me a neuropathic pain killer. Something I want to avoid having fought to get off pregabalin!! 
I hope you are better than January! 
OldDodgy 

[arbor]

Hi @AlanC  I hope you're doing ok.

Thinking of you,

Arbor