KeepFighting85: hello- I'm struggling

[KeepFighting85]

Hi everyone,

 

Well I have made my way to these forums due to my recent experiences with withdrawals. First of all I'd like to say hi to everyone and I am hoping this site will provide other peoples experiences and suggestions to help me as I go along.

 

Pretty much my last year has gone completely downhill.  I have had ups and downs along my journey, which began when I was about 15 back in 2001.  I began having panic attacks at that age and I believe I was prescribed Zoloft then.  At some stage, around 2008 I think, a new drug was on the market called Pristiq and my doctor suggested switching to this. I stayed on 50mg of Pristiq for quite awhile, when I decided to try going off it in 2014. Unfortunately I stopped cold turkey, and after 6 months my panic attacks and anxiety were back. I went back on the Pristiq 50mg. 

 

Last year, I was having side effects, mainly night sweating and after several stressful years, including having my first child, divorce, new town, job etc my anxiety was returning. I discussed with my doctor who advised it might be time to try something different. So I was switched to Citalopram, I think 30mg.  We did this by stopping Pristiq for two weeks and then introducing Citalopram.  The physical withdrawal was very bad, but mentally I seemed to be handling it okay. 

 

In July of this year, after experiencing neurological symptoms for around 6 months, I was diagnosed with Functional Neurological Disorder (FND). This was after having brain MRI done and many bloods to rule out other causes. I was prescribed Lyrica 100mg a day, 50mg in the morning and 50mg at night. I did some research and had heard Cymbalta (Duloxetine) was often used for FND as it can help with nerve pain. My doctor and I decided to switch over to this med. I had also felt the Citalopram was not doing anything to help me. So over about 3 weeks we reduced the Citalopram and introduced the Duloxetine. 

 

After being on Duloxtine about 6 weeks, I noticed my anxiety was worsening a lot. I was getting intrusive thoughts, which I'd never had and was just generally in a state of high anxiety most of the time. I spoke with my doctor and told them I wanted off the medication. She said to just stop taking it since I hadn't been on it long. She gave me Valium as well and said to use it when things got bad with withdrawal. 

 

So here I am, about 3 weeks since stopping CT. First week, the physical symptoms were bad, mainly brain zaps. I can handle those. But second week is when the anxiety pretty much took over. I am constantly in a state of panic. One of the worst symptoms I am experiencing is de-realisation. I feel like I am here, but I am not really 'with it'. Not processing things properly. I worry I am going crazy, going to do something stupid. Not that I want to, I am just worried I will lose control. I have moments where I feel 'semi-normal' but these are few and far between... 

 

In hindsight, after doing much research, I realise stopping these meds CT was not how it should be done. But I am here starting Week 4 now and feel like I have missed the boat in re-instating and tapering off, and worry introducing something will throw me off even more.  I had an appointment with my doctor yesterday, who is very concerned.  She would like me to go to an inpatient treatment centre for a few days, and honestly where I am at right now I would love to do this, but unfortunately my own personal circumstances don't allow it.  I am a single mum to a 5 year old who I have full-time.  I have no family/friends who could look after him. 

 

So I guess I have found my way here in hopes of finding some help, suggestions, anything I suppose. I am lucky in a sense I am still functioning... I work full-time, I have my son to look after, somehow I am getting through even with all this going on. I try do things I enjoy, although much I enjoy I don't seem to enjoy anymore!! 

 

I do not take the Valium much, as I am concerned of becoming dependant on it.  In the past 3 weeks I have probably taken it 4 or 5 times, 2.5mg only. I have heard from reading here that Magnesium and Fish Oil may be something to try? I am willing to try anything that may help.

 

If you've made it this far, thank you for reading, and any comments and suggestions are welcome. 

[Altostrata]

Welcome, @KeepFighting85

 

You are correct, suddenly quitting any psychiatric drug is high-risk for withdrawal syndrome.

 

Quote

Stopped Pristiq CT and switched to Citalopram 30mg - October 2021.

 

You can get withdrawal syndrome even if you are taking another antidepressant. How did you feel after this switch to citalopram?

 

What were the symptoms that led to a FND diagnosis?

 

What times o'clock do you take each of your current drugs, with their dosages? Do you feel worse or better at any particular times of day?

[KeepFighting85]

Hello Altostrata,

 

When I look back, I feel like all my struggles started after I stopped Pristiq and went over to Citalopram. Although it did fix the night sweats. I recall in the few weeks switching over physical symptoms including the brain zaps, as well as a burning type feeling on my skin, but I don’t recall increased anxiety or other mental symptoms at that point.  It was a few months later FND symptoms began and I also started having anxiety attacks while driving. 
 

21 hours ago, Altostrata said:

What were the symptoms that led to a FND diagnosis?

I began having leg weakness and a feeling of numbness and coldness in the legs in January 2022.  I had MRI on back but did not show anything. The symptoms subsided for awhile until July 2022 when I suddenly had what was like a panic attack but with neurological symptoms. Legs were weak, I felt I couldn’t feel them. I got extremely dizzy and faint. Had stabbing pains all over my body. I was driving at the time and managed to make it home, but then could not get out of the car.  Went to Emergency at hospital but by then the symptoms had subsided. All my stats were normal, I was told to get brain MRI done. In the days following I had similar attacks. Got MRI done which shows some abnormalities possibly indicative of MS or similar, however following a neurology appointment they do not think this is the case based on where the abnormalities are. So that is when I was diagnosed with FND. 

 

21 hours ago, Altostrata said:

What times o'clock do you take each of your current drugs, with their dosages? Do you feel worse or better at any particular times of day?

I take Lyrica 50mg approx 7am and 7:30pm at night. I take 1 fish oil 1500mg tablet and 2 magnesium chelate 110mg tablets with breakfast around 8am. I take another fish oil 1500mg and 1 magnesium chelate 110mg with dinner around 6:00pm. Valium I take on average once a week, 2.5mg.  Usually that would be in the afternoon. I also throughout the day use Bach Rescue Remedy pastilles. 
 

I am usually better in the mornings, apart from initial wake up where I can feel extremely anxious and panicky. Once I get going I am good until around lunchtime when the dissociative feelings start which seem to lead to the OCD thoughts and terrible feelings of general anxiety. 
 

Night time varies, some nights around 8pm I feel okay but some nights I don’t. I have trouble getting to sleep. Usually go to bed about 10pm and won’t fall asleep until around 12am. During this window I seem to start to fall asleep but then jolt awake with a gasp, have bad palpitations and kind of a dizzy feeling. 
 

[Altostrata]

On 11/22/2022 at 7:23 PM, KeepFighting85 said:

When I look back, I feel like all my struggles started after I stopped Pristiq and went over to Citalopram. Although it did fix the night sweats. I recall in the few weeks switching over physical symptoms including the brain zaps, as well as a burning type feeling on my skin, but I don’t recall increased anxiety or other mental symptoms at that point.  It was a few months later FND symptoms began and I also started having anxiety attacks while driving. 

 

This sounds like withdrawal syndrome after a drug switch, which may well continue even though you're taking a second antidepressant. Symptoms of protracted withdrawal might include "leg weakness and a feeling of numbness and coldness in the legs" as well as intermittent "anxiety" attacks.

 

Very commonly, neurological examinations for these symptoms reveal nothing unusual. It is unfortunate that differential diagnosis for FND does not include history of withdrawal syndrome. However, few know how to treat antidepressant withdrawal syndrome anyway.

 

From your drug schedule and symptom pattern, it appears that you are having an adverse reaction to the morning dose of Lyrica and possibly interdose withdrawal in the morning, when the evening dose wears off. This suggests the morning dose of Lyrica is too high, causing "dissociation" and, paradoxically, anxiety.

 

How do you feel after taking Lyrica at night? What other drug-related symptoms do you have? Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right.

 

[KeepFighting85]

Thank you for your reply. 
 

I am currently putting together a list like asked and will hopefully post this up later today or tomorrow. 
 

One thing I am trying to do but struggling is to not expect to feel so much better so soon. It’s only been about 7 weeks I think since I stopped taking Cymbalta. I recently had a string of a couple of good days and thought ‘oh things are looking up’ and then bam, last 2 days gone about 10 steps backwards. It was quite frightening. 
 

Getting control of my thoughts is so hard. I am literally focused on what I’m thinking about, how I’m feeling all the time and just can’t seem to move past it, or push the thoughts aside, or simply even just accept them. 
 

As mentioned I will post the list later and see if any suggestions come from that.  Thanks!

[FireflyFyte]

7 hours ago, KeepFighting85 said:

Getting control of my thoughts is so hard. I am literally focused on what I’m thinking about, how I’m feeling all the time and just can’t seem to move past it, or push the thoughts aside, or simply even just accept them. 

 

This has been the hardest part of my journey but have found a few things to help -

 

• "Changing the channel" - I believe this is a DBT technique but when I catch myself ruminating, I acknowledge the thought but then "change the channel" to think about something positive.
• Box breathing - breathing in for 3 or 4 seconds, holding for 3 or 4 seconds, and releasing for 3 or 4 seconds while focusing on breathing.
• Guided meditation - I use an app called Insight Timer to do guided meditation before falling asleep.

I believe there are a few threads on this site dedicated to non-drug techniques to cope with anxiety so those might be worth reading.

[KeepFighting85]

Thank you, I have been trying the ‘change the channel’ you have suggested and it does help but I think will take discipline and practice. 
 

I did use insight timer before, another good idea I need to try weave this into my day. I find it doesn’t help me with sleep so much but might be useful during the day for anxiety. 
 

I have posted below my timelines for past few days: 

 

1 Dec

5:30AM: Wake-up, feel okay but did not have a great sleep.

7AM: 2 x Lyrica 25mg. 

7:30AM: Arrive at work. 

7:45AM: breakfast, 1x 1000mg fish oil, 2x 110g magnesium chelate. 

9:00AM: Feeling very anxious, thoughts racing, body tense. 

10:00AM: Small panic attack. 

10:15AM: Take 1.25mg Valium. 

11:00AM: Feeling much calmer. 

2PM: Anxiety increasing. 

4PM: Severe anxiety. Self harm OCD thoughts that won’t stop. Feeling of doom, dread. 

6PM: Dinner, 1x1000mg fish oil, 1x 110mg magnesium chelate. 

7PM: Take 1mg Valium. 

7:30PM: Take 2x25mg Lyrica. 

9PM: Very tired. Reading a book. 

10PM: Bed. Feel like thoughts are confused. Self harm OCD back. 

10:50PM: Still not asleep. Take another 1mg Valium. 

 

2 Dec

5:00AM: Wake-up. Feel sick to the stomach with anxiety. Like I have an exam coming up. Still getting self harm OCD which makes sick feeling worse. 

6:30AM: Take rescue remedy 4 drops. 

7:00AM: 2x25mg Lyrica. 

7:30AM: Feeling much calmer. Thoughts still on and off but anxiety not escalating. 

9:00AM: Rescue remedy pastille x1. 

11:00AM: Decaf coffee. Small headache. 

12PM: Lunch. Still feeling fairly calm. 

1:30PM: Walk around block. 

4PM: Home from work. Starting to feel a bit of derealisation. Anxiety increasing. 4x drops rescue remedy. Feeling exhausted. 

6PM: Dinner. Forgot to take fish oil, magnesium after dinner. 

8PM: 2xLyrica 25mg.

8:45PM: Valium 1.25mg. 

 

3rd Dec

5:30AM: wake up, feel sick to stomach on waking. Eases off about 6:30AM when I get up

7:30AM: Breakfast. 1x1000mg fish oil, 2x110mg magnesium chelate. 

8:00AM: 2x25mg Lyrica. 

9:00AM: 2mg Valium. 

9:30AM: Starting to feel sense of doom, like I can’t handle it all anymore. Very bad thoughts. 

11:00AM: Still feeling really bad. Panicked but without racing heartbeat etc. 

2:00PM: finally feel calmer, more normal. 

4:00PM: fairly good afternoon. 

6:00PM: Dinner, 1x1000mg fish oil, 2x110mg Magnesium Chelate. 

7:00PM: 1mg Valium. 

8:00PM: 2x25mg Lyrica. 

9:00PM: Bed. 

10:00PM: Weird light sleep again, woke up gasping for breath, feeling confused. Get up, deep breaths. Back to bed and went to sleep

I hope this helps give an idea of medication times, symptoms etc. I have been finding it very tough, and although I know it is not the best idea I have had to resort to taking Valium morning and night at a low dose to see if it helps ease my symptoms. I am honestly not sure if I should just take it when needed, or take a small dose morning and night. I realise this is just another thing to have to withdraw off… but I feel so desperate and sometimes to a point I’m not sure how to go on. 

 

[FireflyFyte]

7 hours ago, KeepFighting85 said:

Thank you, I have been trying the ‘change the channel’ you have suggested and it does help but I think will take discipline and practice. 

 

Sadly, as I have found, there are no quick fixes so it will take time, discipline, and practice but you have started which is great!

 

I also bought a self-help book for OCD that was recommended to me titled "The ACT Workbook for OCD" by Marisa T. Mazza which I plan to begin working shortly so might be worth a look to help with the OCD thoughts/thinking.

[Altostrata]

Thanks for the notes, @KeepFighting85

 

What happened to the Zyprexa?

 

How long have you been taking Valium every day? How long have you been taking Valium twice a day?

 

Offhand, it appears you are taking too many "brakes" -- Valium and pregabalin, which cause paradoxical reactions, such as anxiety and poor sleep.

 

Please take pregabalin on a more regular daily schedule, at 12-hour intervals.

[KeepFighting85]

Hi,

 

I have never taken Zyprexa, I had to google that one. 

 

Currently I am taking the Lyrica 2x25mg approx 7 to 7:30AM and between 7:30 and 8pm at night. 

 

The Valium I have just recently started to take twice daily in the past week. No specific times but at the moment am doing about 1.25mg in morning and 1mg at night. Do you think these are interacting? I am not sure what you mean by 'brakes' do you mean taking too many things to try help?

[Altostrata]

Sorry, I misread the Zyprexa mention.

 

Why are you taking Valium twice daily? How are you measuring dosages?

 

Please list your Valium use in the last month, as accurately as you can. Thanks,

[KeepFighting85]

Sorry I just saw your reply. 

 

I began taking the Valium to try deal with the withdrawal symptoms, specifically anxiety/panic and attempt to stabilise myself before tapering off that. I would take 2 to 2.5mg as needed, but very rarely as I was scared of becoming dependant on it. 

 

When things weren't improving much I thought I'd try a more regular dose but lower dosage. 

 

I have only begun taking more regularly the past 2 weeks. At first was taking 1mg morning and night, approx 9am and 9pm. 

 

Initially I thought this was helping, but I realised it did not make much difference. So in the past week I have done:

 

2mg at night for approx 4 days. 

1.75mg at night approx 3 days. 

 

I was sleeping better those nights and seemed to have more windows during the day. I dropped to the 1.75mg as I figured I'd start reducing the dose now. 

 

To be honest I don't know it helps that much but I felt pretty desperate. 

 

Right now I go from moments where I'm coping to moments where I feel intense fear I won't make it through. It is exhausting and I fear it won't ever get better. 

 

I have read some of the success stories and am trying to cling to that hope as I know it's early days.  But each day is such a battle. Somehow I am still functioning, working but that fear and dread is horrendous. 

 

Thank you for your help it is much appreciated. 

 

 

[Altostrata]

20 hours ago, KeepFighting85 said:

I have only begun taking more regularly the past 2 weeks. At first was taking 1mg morning and night, approx 9am and 9pm. 

 

As Valium has a very long half-life, you are only now seeing the effect of your initial dose of 1mg twice a day.

 

The Lyrica you're taking probably duplicates the effect of the Valium and is not necessary. Taking too many "brakes" can cause paradoxical effects of anxiety, insomnia, etc.

[KeepFighting85]

Well I have started dropping down the Valium, last night took 1.5mg and will do that for a few days then down a bit more. 
 

I do want to get off the Lyrica but will be doing that slowly and will wait until I have tapered off the Valium. I’ve only been taking the Valium a few weeks so I am hopeful I won’t get too much bad side effects, but the Lyrica I have been taking since July so want to make sure I taper that down very slowly. 

[Altostrata]

If I were you, I would not reduce Valium. I would taper off Lyrica, since you've been taking only a month at most. What date did you start it? What date did you start Valium?

[KeepFighting85]

The Lyrica I started back in July, originally taking 200mg, then dropped to 150mg in about September, then dropped to 100mg in October when I stopped the Duloxetine (Cymbalta). This was after I heard several stories of how bad Lyrica is and wanted to come off it but at the time I stopped the Duloxetine and didn’t want to drop both at once. Then after discovering about withdrawals (too late unfortunately) I decided to just leave the Lyrica as is. 
 

Valium I started taking more regularly 2 weeks ago, and in the past week just once a day. Prior to that I was taking at most 2 doses a week (max 2.5mg) for 2-3 weeks. That is why I thought coming off the Valium first might be better given I have not been on it too long and at a fairly low dose, rather than continuing and developing more of a dependence on it and having to taper that over a longer period. 
 

But I welcome your advice. I am a bit scared to taper Lyrica, my windows have been increasing this past week and the thought of potentially reopening myself to further symptoms whilst still at an early stage of withdrawal from Cymbalta is a bit worrying, I wouldn’t want to make things worse than they are. Any thoughts on this? Perhaps I should leave it a couple of months and then give it a go? 

[Altostrata]

Why did you add Valium? What effect does the Valium have on you? What effect do you feel from the Lyrica?

[KeepFighting85]

2 hours ago, Altostrata said:

Why did you add Valium? What effect does the Valium have on you? What effect do you feel from the Lyrica?

I was given the Valium to help cope with the increased anxiety whilst withdrawing from the Cymbalta. 

 

But as I said I was concerned to take it much, so originally was taking only twice a week when I felt I really couldn't cope. 

 

I then discussed with my doctor who suggested taking it nightly for a few weeks to see if it helped ease my anxiety and help with sleep. 

 

Again, I don't want to develop a dependence on it, so have started to taper off it and given I have not been on it too long and on a low dose I am hoping I won't have any major withdrawal symptoms. I'm not sure anything can be much worse than the Cymbalta withdrawal symptoms I'm experiencing anyway. 

 

Lyrica I was given back in July when diagnosed with FND and having episodes of bad nerve pain. I have no idea if it does anything to help. I don't get the bad nerve pain now like I was before. I won't know until I come off it if that will come back, but I have been told 100mg is a low dose. 

[Altostrata]

On 12/15/2022 at 6:40 PM, Altostrata said:

What effect does the Valium have on you? What effect do you feel from the Lyrica?

 

[KeepFighting85]

I’m sorry I’m not sure I understand your quote. I answered as best I could above. I have so many symptoms, I don’t know what are from the drugs. 
 

what effect does Valium have? I presume it helps keep me calmer and makes me less anxious. As I said I am gradually reducing, on 1mg a night now. 
 

what effect does Lyrica have? I don’t know. Until I stop taking it, I don’t know if it is helping nerve pain. 
 

All my other symptoms could be from a range of things, including FND or Cymbalta withdrawal. 
 

The past few days I have had a big flare up of FND symptoms. Leg weakness, coldness down side of legs, heavy feeling in legs. This usually starts after I do any walking. Cardiac symptoms including increasing heart rate, low blood pressure. Muscle fatigue. Pressure feeling in both sides of heads and nerve pain in my upper teeth on both sides. Has not been a pleasant few days. I am off for another MRI in late January on both head and whole spine to see if anything has changed. 
 

So in a nutshell it’s pretty difficult for me to determine what is causing any of my symptoms!

[Altostrata]

Please update your signature with the approximate dates you started Valium and pregabalin.

 

When did you start tapering Valium? Have you been feeling better or worse since lowering the Valium dose? 

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show what your drugs are doing.

[KeepFighting85]

Hi @Altostrata

 

I have updated signature. 
 

I will keep a log, however I have not noticed any patterns in my symptoms after taking medication.  For e.g some days I will feel fine all morning, some days I won’t and medication hasn’t changed. Same at night. Some nights after I take Valium I am fine and go off to sleep fine, sometimes I have trouble falling asleep and get symptoms. 
 

I feel that is what is frustrating with all this, as there is no specific thing that seems to flare symptoms, it seems to be more just random each day.  Last week I had several good days, this week I have had several bad days in a row. 

[Altostrata]

Yep, that's what they all say.