HoneyPot100: a 6 month cycle of madness - my introductory story

[HoneyPot100]

Hello and my sincere thanks to all who have made this source of information and support. I have joined to seek advice (and hopefully to give it where I can) about my current situation. I will timeline my story to begin with to establish some context;

 

2006-2008

Citalopram (30mg) for PTSD

 

2009-2017

Perfectly fine!! "Maintenance dose" of Citalopram (20mg) - doc's orders

 

2017

Jun - Got worried about long term use - doc tapers me off Citalopram in 2 weeks... YES... 2 weeks

Aug - Relapse and back onto 30mg Citalopram

 

2018

Aug - Cross-taper (3 weeks) to Cymbalta 60mg - bad side effects (was told Citalopram wasn't working - but I now know I needed therapy)

Sep - Cross-taper (8 weeks) back to 30mg Citalopram

Nov - Cross-taper (2 weeks) to 15mg Lexapro (was told citalopram was "out-dated")

Dec - Pregabalin (50mg) for 8 days - very bad reaction

 

2019

Feb - Bad reaction to Lexapro - dropped to 10mg (self-medicated)

 

So you can see I have been pushed and pulled by doctors over the last 6 months and have continually had bad reactions to meds apart from Citalopram. Soon after I started Lexapro, I got the shakes to the point I could barely walk, and this was all day, and lasted from week 3 to week 8. Four days after I lowered dose to 10mg (at week 😎 they stopped, but then it hit the fan a few days later. Zaps, dizziness, brain fog, horrible anxiety. I have been managing these with Omega 3 as best I can, but now I have an overwhelming sense of dread and hopelessness all day. This started last Sunday, and whilst there have been moments of glimmer, these are few and far between. I recognise these exact feelings from when I was first taken off Citalopram.

 

So advice I am looking for is whether the drop of 5mg Lexapro has really done all this, of maybe that I have uncovered the Citalopram withdrawal underneath?

 

Now 24 days since I dropped to 10mg, should I brave it out and hope I will stabalise? Should I reinstate the Citalopram? Go back up to 15mg Lexapro and try again with liquid??

 

My doctor no longer knows what to do and has left me to my own devices, and the mental health team who "care" for me cannot let me see a doctor for around 4 months. I am on my own here guys and feeling very low, hopeless and struggling to see the end of the tunnel. Any help will be gratefully received.

 

God bless.

[WiggleIt]

Hello HoneyPot100,

Please know that I am reading over your story in detail so that I can respond carefully, along with other members and moderators here on SA.  I don't want you to be worried that you don't have responses yet, okay?

Warmly,
Wiggle    

Edited March 2, 2019 by WiggleIt

[HoneyPot100]

Completely understood Wiggle. 

 

My sincere thanks.

[WiggleIt]

Dear HoneyPot100,

I'm sorry for what you've been put through, but glad you found this site.  Thank you also for addressing your history in such detail, which is profoundly helpful!

I do have a few questions for you before we get to answering your questions, so I hope that's okay:

 

A.) Was it you or your doctor who wanted you off of the citalopram due to concern about longterm effects?

B.) How did you feel from Aug. 2017-Aug. 2018 when you were back on 30 mg of citalopram?

C.) How did you feel in Sept. 2018 when you were briefly cross-tapered back onto 30 mg of citalopram (again)?

Now, I'll do my best to answer your Qs, and I'm also going to ask some other SA moderators to weigh in about your specific medication advice:

The first question you asked was whether what you are feeling is due to the Lexapro drop or due to citalopram withdrawal. You're likely feeling a combination of everything at this point, but it's impossible to say which medication or which drop or which cessation is responsible for exactly which symptoms. What's important now is for you to feel better.

The second set of questions you asked was about reinstating citalopram or updosing Lexapro.  I'm going to have to ask other mods to help you with this part, so if you could answer the questions I asked above about how you felt on citalopram, then I think it would help them advise you.

Can you also write a medication signature listing all your meds?  In addition to the history you gave us, we also like to have a concise list for easy reference.  Here are the instructions to add your medication signature:

 

a.) Look at the top right of the page where your name appears

b.) Click on your name and you'll see a pull-down menu appear

c.) Under that menu, click on Account Settings          
d.) You'll get taken to a new page.  Look at the left side of that page
e.) Click on Signature
f.) Fill out a short list of your medication history and dates you took the meds in the box that pops up.  (For example, you can just write Sertraline 60 mgs from July 2016 to Sept 2018.)  
g.) Click Save and then you can go back to the rest of the site and keep chatting!

The very last thing I'll add are two links of info from SA that might help you.  One is about reinstatement, and the other is about the recovery pattern of withdrawal:

About reinstatement (This is just general information.  Please wait for mods to advise your specific questions):
https://www.survivingantidepressants.org/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/?tab=comments#comment-33809

About the windows and waves pattern of recovery 
https://www.survivingantidepressants.org/topic/82-the-windows-and-waves-pattern-of-stabilization/

Hang in there!  We DO get better! 

[HoneyPot100]

Hi again Wiggles,

 

Thank you for your response, and in answer to your questions;

 

A - It was me who wanted off the citalopram, primarily as my father who had been subject to the same thing had been diagnosed with Parkinson's. Might not be linked, but it gave me the push.

 

B - August 2017 was a nightmare while the pills were kicking back in - stress, depression, anxiety. Then Sept-Dec was largely stress/anxiety. New year saw depression added. I had good weeks and bad, but there was no rhyme or reason other than life events - all stress related. The biggest one was an immigration court case for my wife which concluded in August 2018. I was switched to Duloxetine just before as I was getting worse - understandably so.

 

C - Going back to Citalopram I believe was masked by the Duloxetine withdrawal. I was having flu symptoms, seizures, sweats, you name it. I couldn't really gauge the effetiveness of the citalopram at the time.

 

I will add the signature as I can see it would be useful - and have a read through the other forum topics you posted.

 

My thanks again.

 

[additional edit]

To aid the diagnosis, I can say that the year on the citalopram felt more like mini PTSD events, for example, I would have a week where the car was broken into, a meeting with the mental health team and I was looking after the neighbours cat. That was enough to put me down for 4-5 days. Then I would be OK for anything up to 2-3 weeks until the next event triggered something else. Looking back, I had a lot of stress, but my tolerance is clearly very low.

 

Now however, having gone through 6 months of withdrawal and side effects, I simply cannot relax. After so long and so many problems, I simply cannot allow myself to NOT be anxious/depressed. Life feels like I am working at a job I hate - I am waiting for the shift to end, but it never does. I hope that makes sense. I am so tired of being pushed and pulled and feeling ill. 

[Altostrata]

Welcome, HoneyPot.

 

What we've seen is that going on and off psychiatric drugs and having adverse reactions to psychiatric drugs often makes the nervous system hypersensitive to drugs and sometimes supplements and even foods, as well as stress.

 

Your going off citalopram too fast in 2017 set you up for withdrawal-induced hypersensitivity, your subsequent adverse reactions to more drugs made this worse.

 

While closely related to citalopram, Lexapro is a much stronger drug, milligram for milligram several times more powerful than citalopram. Your 10mg Lexapro dose is equivalent to about 30mg citalopram.

 

What time of day do you take 10mg Lexapro? What is your daily symptom pattern? How's your sleep?

[HoneyPot100]

Wow... no-one has ever mentioned that to me before, but it makes sense. Thank you Altostrata.

 

I was aware of the relationship between Citalopram and Lexapro/Escitalopram, but was told it was only twice as potent, but if it is three times, then I dropped 10-15mg equivalent, which explains my nightmare couple of weeks. I can see, reading other posts here, why liquid is used.

 

I have delayed-phase sleep disorder, which loosely translated means I sleep at 4am and wake at 11am. Had this for around 16 years now, so I take my meds around midday. I also take 400mg Suntheanine about an hour later. Jury is still out on whether this is working for me..

 

Sleep, for the most part, is good - save a few mornings I wake to dread which doesn't let me sleep. Mornings are by far the worst which, other than the dread, comprise of anxiety thinking about tasks for the day and the headaches, dizziness, fog that accompanies that. I start work soon after and do it "cos I have to". My mood is usually marginally better when working, some days it is very difficult and I just want to stay in bed. After work and back home, mood usually improves more and I will get the night hours more peaceful. 

 

Thanks again for your support thus far. 

[Altostrata]

Do you feel better or worse after you take your daily escilatopram?

 

Do you take anything to sleep? Do you want to correct your sleep schedule?

[HoneyPot100]

Don't take anything to sleep. I often mediate before sleep. Quite happy with the schedule as work/life fits well around it.

 

Whether or not I feel better after the dose if difficult to say with all the side effects, but I have ALWAYS felt worse in the morning and better in the evening - regardless of the medication. But there is no significant point at which I markedly feel them working. I have read that peak blood level is around 5 hours, which would be around 5pm, but there is nothing specific that occurs at this time - or before/after.

 

I do remember when I was weening off Cymbalta that I would feel very edgy towards 9pm when I took the dose - and within an hour I calmed down, so I am capable of feeling it!!

[Carmie]

Hi Honeypot, 

 

I wanted to Welcome  you to SA as well. I love your avatar, it’s so cute. I’m sorry you’re going through this, it really is one of the hardest things we will ever go through, but there is light at the end of the tunnel. We all heal eventually.

 

Like you I’ve been put on lots of different meds and my body is now sensitised, I feel every drop no matter how small. I also have to be careful with supplements and certain foods etc. 

 

Wishing you all the best in your healing journey 💚

[HoneyPot100]

Thank you Carmie for your warm welcome - I'm glad to be here.

 

Reading your signature I can see that you have indeed been through a lot. i forgot to mention that I am very allergic to just about every painkiller out there, and all H1 antihistamines, so if I get a headache, flu or hayfever... I'm screwed! But boy - you have been through a fair bit there. You brave sausage.

 

God Bless you.

[Carmie]

3 minutes ago, HoneyPot100 said:

Thank you Carmie for your warm welcome - I'm glad to be here.

 

Reading your signature I can see that you have indeed been through a lot. i forgot to mention that I am very allergic to just about every painkiller out there, and all H1 antihistamines, so if I get a headache, flu or hayfever... I'm screwed! But boy - you have been through a fair bit there. You brave sausage.

 

God Bless you.

 

Hi again Honeypot, 

 

Yes, we can certainly be allergic to pretty much anything because of our poor desensitised systems. My journey with meds started because of chronic pain, I’m not in pain now. I was on endone, then OxyContin, then Fentanyl for years. I now have a tolerance for them, and they don’t work at all. I had an ingrown toenail operated on a couple of years ago and was given endone, but it did absolutely nothing. I could have taken ten and it would have done nothing, I might as well have taken jelly beans. We’re in the same boat as regards painkillers, except for different reasons. 

 

Take care, sending hugs🤗

 

[HoneyPot100]

"I might as well have taken jelly beans"... Absolutely!!

 

Now being a newbie here, I want to be careful about what can be said, but I have had some excellent success with small doses of Kratom for pain relief and when withdrawal/anxiety gets just TOO much. I in no way advocate the use of other substances (that Kratom is wrongfully and unfortunately associated with) and must warn anyone reading this that Kratom does have withdrawal like any other if abused. But... used maybe once or twice a week, I have used it as a mid-week booster or a weekend treat. I never rely on it - for example, I have had the mother of all headaches for around 10 hours now - and all evening before i went to sleep yesterday. You know the one that stings every time you move your eyes along a horizontal axis... Sigh.

 

Muchos hug right back at ch'a

[Carmie]

Yes Honeypot,

 

Be careful with the kratom, because as you know it’s addictive, it’s a psychotropic drug. You can become dependent on it and you can also get a tolerance to it. You only have to take things a couple of times a week and you can go through withdrawals. Like other meds, when you go off it, you have to taper it.

 

I’m really sorry you have a massive headache, I hope it doesn’t last too much longer. Im not actually a headachy person, I usually only get them when I’m dehydrated, and I drink a gallon of water. 🥤🥤🥤🥤😁 With withdrawals though, you never know what new symptoms will arise. I’ve had toothaches, earaches, burning mouth etc etc. 

 

Rest up, and I hope your headache goes away soon💚

[HoneyPot100]

You are absolutely right - and I cannot assume what other may or may not tolerate. I have not had any Kratom for 2 weeks now. If I don't need it, I will not use it. I began using it in place of Valium. I wanted to limit my use of pills. I was on a Z-drug for sleep as well at the time - but this was such a long time ago. So for me at least, Kratom has been well tolerated and welcomed. But one last time, anyone reading, please do your own research!

 

Time to see if a soak in the bath with a good book will ease the headache.

 

Thanks again Carmie.

[Carmie]

Enjoy your bath and book Honeypot, 

 

Sounds fabulous!!🛁📖💚

[HoneyPot100]

Headache has gone this morning, but still quite dizzy. Want to push myself to get out for a walk, but the weather is very bad. 

 

Again, thank you to all for comments thus far. I hope that what I have explained is useful, and really looking forward to your recommendation to moving forward.

[Carmie]

Glad to hear your headache has finally gone Honeypot, 

 

Speaking of honeypots I must get myself some natural honey🍯🐝😁. 

 

I hope you get out for your walk. I live in sunny Queensland, we aren’t called the Sunshine State for nothing.☀️ I love rain too though, I wish we had more of it. Rain wouldn’t stop me going for a walk, I’d just use my trusty umbrella. I looooove rain!☔️

 

With withdrawals, though, we have to make sure we don’t exercise too strenuously as it can ramp up our CNS and make our symptoms worse. Some people benefit from strenuous exercise during withdrawals, but the majority find their symptoms get worse if they do too much.

 

It’s important though to get some gentle exercise though, and I think walking is one of the best things we can do. I hope you get out on your walk. 

 

Sending hugs🤗

 

[WiggleIt]

9 hours ago, HoneyPot100 said:

Headache has gone this morning, but still quite dizzy. Want to push myself to get out for a walk, but the weather is very bad. 

 

Again, thank you to all for comments thus far. I hope that what I have explained is useful, and really looking forward to your recommendation to moving forward.

Hello HoneyPot100,

You had asked whether to reinstate (RI) citalopram or updose lexapro.  How have you felt the past couple of days?  Does your body feel like holding where you are might an option?

[Altostrata]

Do your symptoms follow any daily pattern?  Please keep daily notes on paper with times of day for when you take your drugs, their dosages, and your symptoms. You can post them in this topic with a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. Post your notes here in your Intro topic.

[HoneyPot100]

Wiggles - I am going through the motions of anhedonia at the moment, along with tinnitus. Different combination of things every day. I really think I have a combination of both Citalopram and Lexapro withdrawal, but it has been such a rough week and do feel as though a change is needed. I could give it a few more days, but I worry that the depression will take too much of a hold and I will have more trouble shifting it.

 

Altostrstrata - Meds are always taken at midday, except on the off chance I have a really good sleep. I have always kept a daily log of hourly feelings and symptoms. Whereas before I dropped the Lexapro, I could be more guaranteed of a rest from emotional symptoms after around 9pm, this has gone out the window, and I can expect depression or anxiety to crop up at any given moment without warning although the worst of it is still when I wake for a good 4-5 hours.

 

Carnie - The weather is the UK is not known for its sunny spells I can assure you! The wind and rain has been relentless today - no-one would have survived out there! Instead I caught up on Uni work and had a look around the forum on advice for emotional spirals and all manner of withdrawal wonders. I'm hanging in there, but just getting tired of the groundhog day saga. Just a glimmer or normality would be nice. Hugs right back to you in sunny Queensland!

[ChessieCat]

3 hours ago, Altostrata said:

Do your symptoms follow any daily pattern?  Please keep daily notes on paper with times of day for when you take your drugs, their dosages, and your symptoms. You can post them in this topic with a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. Post your notes here in your Intro topic. 

 

Example:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

[HoneyPot100]

So far today following a restless sleep:

8am Woke feeling ill

10am Slept a little

12pm Sat up in bed and replied to emails etc

1pm Took 10mg Lexapro

2pm Called doctor with suspected chest infection - feeling low and now anxious to go to doctor appoitment

3.30pm Say first client for work - very anxious thinking about doctor

4.30pm Doctor - felt a bit better once with doctor and prescription for antibiotics

5pm Home and waves of hopelessness coming over me. Too much stress in my life that will not end. Very low.

 

Will edit later

[ChessieCat]

You can only edit for 1 hour after posting.

 

Please post 1 whole day in one post.  Thank you.

[HoneyPot100]

Noted - thank you.

 

Have finished work and aching all over and coughing up a lung. Will be hard to ascertain MH issues and withdrawal from those of being ill...

[Altostrata]

On 3/3/2019 at 6:05 PM, HoneyPot100 said:

Meds are always taken at midday, except on the off chance I have a really good sleep.

 

It's important to take the drug at the same time each day. If your nervous system is sensitive, an hour or two off-schedule can cause symptoms such as headache and worse.

 

As you may be sick now, best to hold on the Lexapro dosage. Did the doctor take a swab to ascertain your need for an antibiotic? They can rock your nervous system as well. Hang in there.

[HoneyPot100]

Thank you Altostrata - I think maintaining a status quo on the meds whilst ill is a good idea. Doctor listened to my chest and looked in throat. He offered my steroids as well as the antibiotics, but he forgot that I have reactions to them. I'm even getting mild tachycardia from the antibiotics.

 

Anyway - my "diary" for today;

 

12pm Wake, but lay in bed trying to sleep as had bad night
1pm Not getting anywhere, so take 10mg Lexapro and get up
1pm-3pm Sit on forums. Feeling anxious generally
3pm Sudden lift out of nowhere - lasts 30mins - breakfast
3.30pm Wash of depression and hopelessness
4pm Work
5.30 - 6.30pm Feeling a bit better, able to converse with people
8pm Grocery Shopping - can feel depression building again
8.30pm Home and depression got hold again
9pm Lunch and depression lifted
9.30-11pm Work (from home)
11-4am Can usually relax during this time knowing mood will be ok
 

[Altostrata]

If the infection was not diagnosed as bacterial with a swab test, it may be viral and you're taking antibiotics unnecessarily.

[HoneyPot100]

Absolutely - and taking antibiotics could open me further to other viral infections once the course is complete. I am considering some probiotics as a follow-up - any thoughts on that?

 

Welcome to the UK health service Altostrata. Swab tests cost time and money - both of which the government doesn't supply. Lesser of two...

 

Don't even get me started on the Mental Health service over here.

[Altostrata]

Take probiotics while taking antibiotics, at a different time of day than the antibiotics.

[HoneyPot100]

Thank you - was always under the impression that it was to be following the course.

[HoneyPot100]

Second diary day. Noticed the same "wave of hopelessness" hit 90 minutes after antibiotics - the same as yesterday, and the lift in mood at 9pm. Apart from the correlation, it doesn't mean anything to me - so I am open to guidance.

 

Altostrada - a good brand probiotic due for delivery in the morning. I will take as suggested and report back.

 

12pm Wake feeling very low/hopeless - anxiety OK - nasty stomach ache
12.30pm Get up after getting nowhere
1pm Lexapro 10mg - stomach better
2pm Antibiotics
1.30pm Slight improvement in mood
3pm Work - still improved mood
3.30pm wave of hopeless hits
4.30-5pm Rest - still low. Slight dizziness
5pm-8pm Work - still very low and dizzy
9pm Lunch, slight stomach upset, mood improving
10pm-1pm Mood improved

[Carmie]

Hi Honeypot, 

 

How is your chest feeling now? I hope you’re feeling better soon. I could never understand why people give antibiotics for viruses either as they only kill bacterial infections, but as you said you couldn’t get a swab test. 

 

I’ve always found the best antivirals and antibacterials for me have been olive leaf extract and coconut oil. I’ve killed all kinds of infections with them, including ear infections. I had a cold a couple of weeks ago, but I didn’t catch it early enough and didn’t take anything. I had a sore throat for a while and thought it was withdrawals, as I get sore throats from withdrawals too. Usually if I take either of these early on it kills virus etc in its tracks. I took a bit of coconut oil during the cold and it stopped it from going into my chest. People going through withdrawals can be sensitive to supplements though, so you would have to experiment to see what you can tolerate. 

 

I was around someone once for a month and a half who had two different flus and had even been hospitalised for it and I didn’t catch either of them because I kept taking the above. They were coughing non stop. 

 

Take care, and I hope you’re better soon 💚

 

[HoneyPot100]

Useful info Carmie - thank you. I am all in favour on natural ways of curing things.

 

I stopped taking the antibiotics on Friday, and my mood picked up that afternoon, and I ended up having a relatively good weekend. Chest is clearing up nicely it would seem without the pills.

 

Unfortunately, I woke today with the worst case of dizziness, blurred vision and couldn't get out of bed. Felt more like pills than flu thou. I have been in bed all day, had to cancel work, and am just fed up with being so damn ill all the time. I have no-one to tell me what to do with my pills, and I feel I am going crazy.

 

 

[WiggleIt]

How ya been, Honey?

[HoneyPot100]

I am back on 30mg Citalopram - the Lexapro just did not stop with the effects. Every day it was dizziness, head fog and the shakes. They didn't show any sign of improving.

 

I am now day 17 on the Citalopram. I think I did something stupid and didn't taper, and just cold turkey'd the Lexapro.

 

Was fine for the first 10 days and sure enough, physical symptoms started to abate. Then day 11 - whammo. Life became intolerable. Everything seems like a mountain to climb. Only got out of bed once all weekend. I cannot describe the feeling but it feels like I should be sectioned. Feel I am going mad. 

 

I see that poor intolerance of stress is a common withdrawal symptom, but man, I didn't know it could be THIS bad. Just hope it starts to go soon - I need to get on with life...