17 replies to this topic

[Mocha]

Hi all,

 

I am hoping to get some advice and support. 

 

I believe I am having severe withdrawal, from which medication I am not entirely sure. In approx October 2021 I quit taking Pristiq 50mg cold turkey to switch to Citalopram, as advised by my doctor.  I realise now that probably shouldn't have happened. I had been taking Pristiq for about 6 years at that point.

 

I started Citalopram a couple of weeks later, going up to 30mg over about a month. 

 

In January 2022 I began experiencing some neurological symptoms. In July of 2022 after having lots of tests done I was diagnosed with Functional Neurological Disorder (FND). To help with this, I was put on Lyrica 100mg daily (2 x 25mg in morning, 2 x 25mg at night). 

 

At that point I began having increased anxiety symptoms and was not sure the Citalopram was helping at all.  After doing some research, my doctor advised to try Cymbalta, which has been known to help with nerve pain. I lowered Citalopram from 30mg to 0mg in about 3 weeks, and started the Cymbalta 30mg during that period.

 

About 5 weeks later, I started feeling quite dissociated. I had never experienced dissociative symptoms before. This made me panic and I wanted off the Cymbalta. Went back to doc, and it was decided to just quit taking the Cymbalta.

 

I am now about 4 weeks down the track and am in a mess.  I have constant anxiety, panic attacks have returned full blast and I am suddenly having OCD self-harm thoughts. I feel like I've developed a phobia of suicide which sounds bizarre to me but when I get anxious, I start thinking I will lose control of my mind. I have dissociation on a daily basis, nothing looks real, I start questioning reality and can't seem to get my mind out of the loop.

 

My doctor gave me Valium and said to take 2.5mg when things get super bad.  I have done this a couple of times. It does help, but I am terrified of becoming dependent on it, so have only taken it a few times. 

 

I have an appointment tomorrow with my doctor.  I am considering re-introducing Citalopram at a low dose, say 5mg, and see if it helps with this horrendous withdrawal.  I am not sure how else I am going to function soon and am terrified I am going to lose my mind. I was hoping to get some advice and whether to give this a try, or just keep trying to stick this withdrawal out. I am concerned I may get worse re-introducing, and am concerned I may get worse anyway if I don't! I work full-time and this is starting to impact my work, my life. I don't want to re-introduce Cymbalta, I am terrified of this drug. 

 

Thank you for reading!!!

 

[fishinghat]

Welcome Mocha

 

Let me cut to the chase on your situation...

 

First of all what your dr has done is not uncommon.

 

Second - Pristiq 50mg cold turkey can cause severe withdrawal and some suicidal thinking, BUT the Citalopram normally (not always) helps offset this withdrawal but it can take 6 to 8 weeks to fully kick in. If I read between the lines on your post it sounds like you were on the Citalopram for at least 7 months. Definitely long enough to see releif if it was going to help.

 

Third - As it says in Wikipedia "A functional neurologic disorder or functional neurological disorder (FND) is a condition in which patients experience neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts."

It is a condition is NOT a disease. It is a set of symptoms that often appear in unison and does not reflect a specific cause. Certainly, withdrawal can be a cause of FNC as can other causes. 

 

Fourth - Lyrica 100mg daily is certainly commonly prescribed for these symptoms and could have helped significantly with the anxiety but a significant amount of people using Lyrica often see little to no improvement in anxiety.

 

Fifth - The lowering of Citalopram from 30mg to 0mg in about 3 weeks and started the Cymbalta 30mg is a routine cross-over [period when switching antidepressants. 

 

Sixth -  The anxiety, panic attacks, OCD self-harm thoughts and dissociation after 4 weeks on Cymbalta are very common and a strong indicator that you should not be taking it.

 

Seventh - "I start thinking I will lose control of my mind. Actually very accurate. Antidepressants have a very significant effect on serotonin in the brain as well as other neurotransmitters. These neurotransmitters control your moods and emotions. These chemical reactions are beyond your control. The good news is that they will stabilize in time. The bad news is that it may take a while. 

 

Eighth - 2.5 mg valium can be very addictive but an occasional use is fairly safe depending on your vulnerability to addiction. You are correct in using it on a limited basis. Was this to be used 2.5 mg per day or 2.5 mg every 4 hours as needed?

 

Ninth - Re-introducing Citalopram at a low dose is an iffy situation. It has been my experience on this website that going back on a recently discontinued antidepressant is only successful about 50% of the time. The issues are that it will again take up 8 weeks to fully kick in and if it does not help then dropping back off of it will only add to your withdrawal. 

 

Suggestion - Many drs in my area now stay away from the benzos due to their bad withdrawal and addictiveness and have went to hydroxyzine and/or clonidine. Neither are addictive, they kick in within an hour not weeks and have NO withdrawal. I know many who have had good success using these drugs. Hydroxyzine is an antihistamine FDA approved for anxiety and clonidine is an alpha-adrenergic agonist (controls adrenaline levels) and is FDA approved for PTSD, a form of anxiety. This is something you might discuss with your dr.

 

please feel free to let us know if you have any questions as well as giving us feedback on how you progress.

[Mocha]

Hi fishinghat, thank you so much for your reply.

 

I have been doing a lot of reading the past few weeks, as one would probably do in my situation, looking for help.

 

From my reading I understand going back on might not necessarily be much help. I guess my thinking at the moment is so distorted and anxious that the thought of anything helping feels like its worth a try.

 

I have read about the hydroxyzine and clonidine, actually this morning I was doing some research on the clonidine. I did get a bit concerned about withdrawal from that as well, and also potentially low blood pressure as I do have low blood pressure on some occasions.

 

The Valium 2.5mg was prescribed on an 'as needed' basis. So nothing regular. I typically take it when I feel completely panicked and can't calm down, on average once or twice a week. 

 

I did see my doctor last week, and she was quite concerned about my situation and seemed to want to potentially put me back on something. At that stage, based on my research, I advised I didn't want to go on anything and would see her again in a few weeks to see how I was managing. 

 

I do feel quite confused as to what to do now... I do have good windows.  Yesterday AM I felt almost normal for a few hours, before I crashed again. I am also trying some supplements, and have started taking fish oil once daily, and magnesium twice daily. At this stage can't say I have noticed much difference, but then again maybe yesterdays window was a sign. 

 

I will discuss tomorrow those medications and see what my doctor thinks.  She is just a general doctor so not specialised in this sort of medicine.  She has recommended I see a psychiatrist who would be more familiar with the medication but I probably can't get in to see one for a few months as they have long wait lists. 

[fishinghat]

If you have low bp then hydroxyzine and clonidine may be a concern. 

 

The good windows are a very good sign. Typically these would indicate a shorter recovery period. 

 

Hang in there and keep us posted. Have you read through our free ebook?

 

I am off to get some routine blood work done but will check back when I get back home to see if you happen to have any questions.

[Mocha]

I have spoken to my doctor this afternoon. I also had a psychology appointment this morning. 
 

I was feeling okay most of today, woke up feeling more ‘normal’ but then had a panic attack not long after waking. I managed to get through that and straight after had the psychology appointment. I did find this helpful but it is slow going. 
 

I spoke with my doctor and suggested trying either the Hydroxyzine or Clonidine. She was more familiar with the Clonidine but was a bit concerned about some symptoms I’m having and wants me to have a heart check first (I have a history of SVT). 
 

She did not really recommend reinstating Citalopram as it would be more difficult to get off if it doesn’t end up helping. 
 

in the meantime she would like me to try taking Valium 2mg at night for a few weeks to help with sleep and the anxiety and also during the day if I feel like I can’t handle things. I am not too keen on doing this but also concerned I can’t get through this. 
 

This afternoon the OCD thoughts have returned but I’m very tired and body is feeling weak which is probably not helping things. 
 

I have an appointment in 2 weeks with my Neurologist to discuss FND and my doctor has suggested seeing if they are familiar with a psychiatrist who may be able to assist more medication wise. 
 

I am happy my doctor is willing to take on board my suggestions. I will see how things go these next few weeks. I also have a lot of life stresses at the moment (single mum, job interviews coming up, just bought a house) which are no doubt contributing to my anxiety. 

[fishinghat]

I must say that your dr seems to be giving it her full attention. That is great.

 

One thing that seems to help many members is to take it easy during those good periods. By relaxing when you are feeling better it seems to lengthen those stretches and shorten the bad events.

 

The valium is a risky situation.  I hate to see you swap one issue for another but I would also hate to see you continue to suffer. 

 

Have you tried taking just 1 mg of valium to see if it is just as effective? Sometimes that is the case. 

[Mocha]

Thanks, yes I am concerned about taking the Valium. I took 2mg before bed last night and it does nothing to help me sleep. I think if anything it’d be better to take during the day to help alleviate symptoms. 
 

Today has been a worse day. I seem to have developed a new symptom, sort of like dissociation except I’m feeling like I can’t feel my legs/arms. They work but it’s a feeling like I am detached from my body. Not sure whether this is FND related or withdrawal related, but it’s very unnerving. 

 

I took 1mg of Valium earlier today. I am not sure it has done much, I haven’t gone into a full blown panic attack but anxiety is definitely there. 
 

I am just clinging to hope that this will all get better at some point, hopefully sooner rather than later. 

[fishinghat]

 "I took 2mg before bed last night and it does nothing to help me sleep. I think if anything it’d be better to take during the day to help alleviate symptoms. "

 

I fully agree.

 

Your symptoms will continue to change with time. Some will fade soon and others will develop. That is normal. After being on this site for 10 years I can tell you that your symptoms, while very distressing, are usually far worse than this. I know that doesn't help you feel any better but I like to tell it like it is. The fact you have times where you feel better is a good sign but based on others experiences here I would say around 4 months or so to begin to see improvement. Now that is just an educated guess based on experiences seen on this site. You will need to be very patient and try to minimize stress during this period. 

[Mocha]

Well last few days I feel like I am improving. The times where I feel so anxious and dissociated have lessened. The more anxious I get, I notice the dissociative symptoms increasing. 
 

I try and keep busy. I am finding night time the hardest, being at home just me and my son I feel more anxious, not having additional support available. When I get tired, my anxiety increases a lot. I am guessing the physical symptoms of tiredness bring on a feeling of panic for me. 
 

I am taking about 1.25mg Valium just before bed and sometimes I take the same amount during the day sometime if I feel I need it. 
 

I am hopeful I will continue improving. Work is difficult, the days I need to go into the office are really hard. My anxiety flares up and my body just tenses up so much I am exhausted by the end of the day. I long for the day I might just feel ‘normal’ going into the office and not worrying about how I feel, or how my body will cope. But I know it is going to take some time. Unfortunately I seem to have injured my lower back somehow and am experiencing a lot of pain at the moment, and sitting in the office does not help!

 

I see my neurologist next week regarding my FND diagnosis. I will probably discuss the Lyrica and potentially tapering off that, but likely not for a few months… don’t want more stress on my body just yet. 

 

Lastly, I still need to do the Holter monitor before I can trial the Clonidine, but at this time of year it is hard to get organised. Hopefully I can get this done soon. 

 

Hope you are well and thank you for your support so far, it has been very helpful to know there is support available. 
 

[fishinghat]

That sounds like a good sound approach. Watch the Lyrica. It has a nasty withdrawal as well. When it comes time to wean off the benzo let us know. We have an effective slow process that minimizes the withdrawal for most.

[Mocha]

Think I spoke too soon, the last few days I‘ve had periods which I wasn’t sure I was going to come out from. 
 

I am noticing a pattern to it, around 10am it starts, I’d be feeling okay and then gradually these feelings of doom start..l I feel terrified, feel like I can’t go on, can’t cope with everything. I would describe it like a panic attack except I don’t have a racing heartbeat or sweating etc. it’s just a terrible feeling in my head and I feel sick to the stomach. Valium does not seem to help, at least the dose I am taking anyway which is just 2mg. 
 

I am starting to wonder if it’s a reaction to the Lyrica. I take 2x25mg around 7-8am in the morning and the same around 8pm at night. 
 

Any thoughts? Or is this just part of the Cymbalta withdrawal maybe. I don’t know. All I know is it’s terrifying, so far I’ve made it through but there are times when I feel like I’m ready to drive myself to hospital. By around 1 to 2pm I feel better again, well better enough to cope anyway.

[fishinghat]

Hi Mocha

 

A couple thoughts here.

 

First, I can not rule out that this could be a reaction triggered by Lyrica although I can not say i have seen this before. The best way to see if this is the case is to change your schedule on taking Lyrica by about 2 hours. Instead of 7 - 8 AM try 9 -10 AM. If it is caused by the Lyrica then the feeling of doom will shift to a later time as well. If this is the case then let me know and I will pass along what other members have done with similar situations.

 

I also suffered with thoughts of impending doom for around 6 months. Hang in there. We will work through this together.

[Mocha]

Well another week gone by. I did experiment changing the Lyrica time a couple of days and can’t say I noticed a direct correlation with the feelings of doom moving to a later time, so I have gone back to taking it 7:30AM and 7:30PM. 
 

I had an appointment with my Neurologist earlier this week, for the FND diagnosis. Will be doing repeat MRI and also a full spine MRI in January. I did discuss tapering off the Lyrica. She suggested dropping 25mg each week. I think that is too fast and would feel more comfortable doing a 10% drop every couple of weeks, dependent on any symptoms. I’m not sure if I can get a liquid prescription but if not have read about dissolving in water and measuring doses that way. Any thoughts on the suggested 25mg drop? 
 

I am now taking the Valium night time only, around 9:15PM. This seems to have been working well the past week. I had a question on that also, I haven’t been taking it very long, I guess regularly a couple of weeks now. The past week I’ve gone from 2mg at night to approx 1.75mg. How hard at this dosage and given how long I’ve been taking it would it be to drop off? I am thinking of going down to 1.5mg and dropping around 0.25mg each week. Though I’m not sure at this stage how much more my doctor will give me. I’m not sure also what would be best, tapering Lyrica first and then dealing with the Valium or the other way around? Any thoughts?

 

Symptoms wise I am up and down. I have noticed early morning between 5 and 8am I am not great. During the day can either be fairly good or have worse symptoms between 11am and 1pm. Then usually not too bad until about 4pm. Between 4pm and 6:30pm I find very difficult and this coincides with my being home alone, and also typically when I feel very tired. After dinner I seem to settle down. 
 

I have upped my fish oil after doing some reading on the levels of DHA and EPA, so am now taking 4 tablets daily, 2 morning, 2 night. This seems to have been beneficial.  
 

Just taking things day by day at the moment, some days are truly horrendous and others I have moments where I feel hope. I am hoping to ride it out and not resort to going back onto something, though during those tough days it is hard to convince myself not to. But I’ve made it this far and I feel like this path is the right one to take despite how hard it is. 

[fishinghat]

Hi Mocha

 

Let's start by talking about the Lyrica taper. I will post again on this thread about the taper my wife did. It worked fairly well. She did feel a little grumpy but came through it fine. She was on 50 mg/day. The water titration method worked well. 

 

As far as the valium is concerned, almost all the research and manufacturers agree that if the dosage is terminated within the first 4 weeks of usage there is little to no withdrawal. I can not verify that as most member had been on a benzo for years before tapering but that will give you an indication that you may have little issues at this point. I would suggest you wean off the valium first before you get too addicted to it. The Lyrica can wait.

 

Your cycle on when you feel bad is fairly common during most withdrawals except many feel worse in the evening but not a big deal. Feeling worse when being alone is very common as this "quiet time" gives your brain a chance to dwell on how you feel. Try distracting yourself. A little soft music in the background, a little tv to listen too or such other distractions.

 

As the ebook says up to 3000 mg of EPA and DHA per day. Do not exceed this amount though as it can cause an irregular heartbeat.

 

The last paragraph of your post is spot on. Exactly right. Hang in there and don't let any drs put you on more doses of strong meds at this time. You can get through this.

[Mocha]

Thanks for your guidance. 
 

I am hesitant to drop the Valium altogether so will continue tapering over the next 2 weeks. Probably take it down by 0.25mg every couple of days and see how that goes. I know it has a long half-life so not sure when I’d start experiencing withdrawal if I was to experience anything. 
 

Today was an eye-opener in realising how sensitive my emotions are to any stress. I actually had a fairly good day in comparison to the last few, then tonight had something stressful happen (nothing major) and straight away my emotions just went out of control, the feeling that I couldn’t cope overwhelmed me. It was quite scary to realise how something fairly minor, though stressful, could have such a significant impact. 
 

I think I am through the worst of it, but I think it will linger the next few days. Talking myself through it helped and telling myself it will pass, but gee it is hard to believe when you feel you’re in that dark hole. 
 

[fishinghat]

Your right, it is remarkable how emotionally sensitive one becomes during and even after withdrawal. The human brain is so complicated.

[Mocha]

Hello, thought I would check in, it's been a few weeks! Hope you had a lovely Christmas and New Year.

 

I am doing okay, I think I am still expecting too much too soon.  I went through to find out exactly when I stopped taking Cymbalta, and it was 28th October, so just over 10 weeks now.  So I suppose it is still early days really! I would say my symptoms have improved quite a bit. The worst part now is the feeling that I am just not quite right, not myself, and don't feel 'safe'. That is the best I can describe it. I have noticed the past few weeks I am able to cope with this feeling better. Before, I would be overcome by the feeling and the fear that comes with it, and feel I am in a constant state of dread. Now, I feel it but I am able to just recognise that it's there, but not let it overcome me. This isn't always the case, I do still get moments where it really does overcome me, but it normally does not last as long. I have become good at telling myself, 'this will pass'. 

 

Another lingering side effect is the morning 'dread'. I find if I wake up about 6am it is not as intense, but if I wake 5:30am it is very full on. Sick feeling in my stomach, buzzing feeling all through my body. I am able to as well just recognise that this is a withdrawal symptom that passes around mid-morning, however it is extremely uncomfortable. It eases when I get up and start doing things. 

 

Medication wise, I am now down to 0.5mg Valium day, and still on 100mg Lyrica a day. I am taking the Valium down slowly, I don't want to risk upsetting my system again. So I think it will take a few months, longer than I wanted but I feel it is probably the best way to do it. Once that is down, I will begin the journey of tapering down the Lyrica. Part of me wonders now whether Lyrica has some role in how I feel as well as its only something I started taking in July this year along with the Cymbalta. It's hard to tell whether Lyrica could be contributing to some of my symptoms and I won't know until I start coming off that. 

 

I thought I'd mention one other symptom I am having, I have no idea whether it is part of withdrawal or perhaps just something else going on with me. But sometimes when I start to drift to sleep I feel I am not breathing, and suddenly take a gasp of air. I feel a rush go through my head. This does not happen frequently. I bought a new smartwatch recently, and I have noticed coinciding with these incidents my blood oxygen levels fall to around 80% at the time I feel these 'episodes'. I did not have anything like this before I was diagnosed with the FND, put on Lyrica and Cymbalta, and then the withdrawal. So whether its coincidental I don't know! I will be mentioning to my doctor anyway, perhaps a sleep study might be needed. 

[fishinghat]

"But sometimes when I start to drift to sleep I feel I am not breathing, and suddenly take a gasp of air. I feel a rush go through my head."

 

​I had the same experience a couple of years ago and it turned out to be low blood pressure. Something you might consider.

 

As far as the rest of your symptoms, I would say you are doing very well. You should be proud of yourself. Wait until you see how great you will be doing in a couple months!!!!