HealthHopeHappiness: sertraline withdrawal - will the side effects ever go?

[HealthHopeHappiness]

How do I know that this is definitely withdrawal? I find it so hard to remember a time when my symptoms had eased any, it seems like they are getting worse. My left foot it constantly twitching, walking is difficult, I have weakness in my hand, widespread twitching/tremors, and I feel agitated and anxious beyond belief. As time passes since having my neurology investigations, I am taking less and less comfort from them being normal and convinced the consultant has missed something. Is this a normal thought process in withdrawal? 
 

Also, I have been reading the NICE guidelines about switching SSRIs and it says when switching from Mirtazapine to Paroxetine/Sertraline that it should be a cautious cross-taper. I was told by my GP to just stop the Mirtazapine (was on it approx 5/6 weeks) and switch to Paroxetine. At the time of doing this I had lots of signs of serotonin syndrome - twitching, fast heart rate, agitation/akathisia but I was told to just ride it out. I feel so let down by my GP Practice. 

[Rosetta]

I understand that feeling of betrayal by doctors.  It’s outrageous, if you ask me, and it just keeps happening. The anxiety that is caused by your adverse reaction and is a part of the dysregulation of your nervous system is not a regular type of anxiety.  Having recurring physical symptoms that are worrisome add to your anxiety, of course.  I do not think that you have an underlying condition.  This is nervous right system dysregulation caused by SSRIs.  It will begin to lessen eventually.  

[Rosetta]

I understand that feeling of betrayal by doctors.  It’s outrageous, if you ask me, and it just keeps happening. The anxiety that is caused by your adverse reaction and is a part of the dysregulation of your nervous system is not a regular type of anxiety.  Having recurring physical symptoms that are worrisome add to your anxiety, of course.  I do not think that you have an underlying condition.  This is nervous right system dysregulation caused by SSRIs.  It will begin to lessen eventually.  

[Rosetta]

I understand that feeling of betrayal by doctors.  It’s outrageous, if you ask me, and it just keeps happening. The anxiety that is caused by your adverse reaction and is a part of the dysregulation of your nervous system is not a regular type of anxiety.  Having recurring physical symptoms that are worrisome add to your anxiety, of course.  I do not think that you have an underlying condition.  This is nervous system dysregulation caused by SSRIs.  It will begin to lessen eventually.  

[HealthHopeHappiness]

10 hours ago, Rosetta said:

I understand that feeling of betrayal by doctors.  It’s outrageous, if you ask me, and it just keeps happening. The anxiety that is caused by your adverse reaction and is a part of the dysregulation of your nervous system is not a regular type of anxiety.  Having recurring physical symptoms that are worrisome add to your anxiety, of course.  I do not think that you have an underlying condition.  This is nervous system dysregulation caused by SSRIs.  It will begin to lessen eventually.  

Thank you, Rosetta. You are so kind to reply to me. Gosh I hope this starts to ease soon, even for a day. X

[HealthHopeHappiness]

Can anyone explain what dystonia feels like please? I am finding it difficult to use my left foot when walking, the arch feels like it has a mild cramp most of the time. Sometimes I feel like I might trip and fall, or I have foot drop. My left foot also twitches non stop, light quick twitches. Trying my best to ignore but I am a leader in a school and spend my days walking up and down the corridors, visiting classrooms etc, and it is taking me all my time not to fall. My movements are so slow, clumsy and stiff. I searched online for foot dystonia symptoms and I don’t know if that is what it is. Any help appreciated xx 

[HealthHopeHappiness]

On 6/16/2021 at 8:53 PM, HealthHopeHappiness said:

Can anyone explain what dystonia feels like please? I am finding it difficult to use my left foot when walking, the arch feels like it has a mild cramp most of the time. Sometimes I feel like I might trip and fall, or I have foot drop. My left foot also twitches non stop, light quick twitches. Trying my best to ignore but I am a leader in a school and spend my days walking up and down the corridors, visiting classrooms etc, and it is taking me all my time not to fall. My movements are so slow, clumsy and stiff. I searched online for foot dystonia symptoms and I don’t know if that is what it is. Any help appreciated xx 

Anyone? I’m really struggling with walking and lifting the front of my foot up. Feel like everything is getting worse physically. 😨

[HealthHopeHappiness]

Just woke up with the most terrifying symptom, complete numbness of my left hand/arm. I couldn’t move my fingers, my hand was totally dead. Like it was paralysed. When I woke and tried moving the sensation gradually returned but with prickly nerve pain. What on Earth, is this a WD symptom??  

[Rosetta]

I’m sorry Indidnt answer you about dystonia.  Yes, your muscles are contracting and they cut off blood flow.  I had so much numbness, tingling, even pain.   Putting heat on my forearm helped.  There are stick on heat patches you can buy at the pharmacy.  They last 7-8 hours.  Try to find the muscle by moving it around up before you per, off the protection for the adhesive.

 

I’m too tired to go into detail about dystonia, but I think you may have it in your foot and arm.  It will get better someday.

[HealthHopeHappiness]

On 6/26/2021 at 5:30 AM, Rosetta said:

I’m sorry Indidnt answer you about dystonia.  Yes, your muscles are contracting and they cut off blood flow.  I had so much numbness, tingling, even pain.   Putting heat on my forearm helped.  There are stick on heat patches you can buy at the pharmacy.  They last 7-8 hours.  Try to find the muscle by moving it around up before you per, off the protection for the adhesive.

 

I’m too tired to go into detail about dystonia, but I think you may have it in your foot and arm.  It will get better someday.

Thank you @rosetta. I bought heat patches like you suggested and they are helpful. Sorry to hear how tired you are, I hope it passes soon. X 

[HealthHopeHappiness]

I finally handed a letter of complaint into my GP, along with the articles @Shepprovided links to. I had a 20 minute phone call tonight with my GP who completely agreed with everything in my letter and said a review of SSRI prescriptions will take place. It doesn’t help me in anyway but I am just glad that change will happen, however small. 
 

I just wish I could have a small window. My symptoms are so severe right now - twitching, difficulty walking with my left foot, difficulty using my left hand, pins and needles at night, slurred speech, restless legs, crawling sensation on my scalp. The list could go on. 

[HealthHopeHappiness]

For anyone else who has suffered from muscle twitching, how long did this symptom last for you? Initially my muscles twitched almost exclusively on the left side of my body but now it is both sides. My left foot was, and still is, particularly bad but now the right foot is twitching away too. Is it normal for symptoms to worsen as time goes on? Anyone any tips on how to accept this worrying symptom? I find it triggers my anxiety terribly. X

[Surviving82]

2 hours ago, HealthHopeHappiness said:

For anyone else who has suffered from muscle twitching, how long did this symptom last for you? Initially my muscles twitched almost exclusively on the left side of my body but now it is both sides. My left foot was, and still is, particularly bad but now the right foot is twitching away too. Is it normal for symptoms to worsen as time goes on? Anyone any tips on how to accept this worrying symptom? I find it triggers my anxiety terribly. X

@HealthHopeHappiness, hi friend. I am very sorry that you are going through this 😞 I wish I could be helpful to ease your symptoms. I never experienced twitches or muscle weakness in my own WD (at least not yet), however it makes sense (as some people on here reported) that mild exercise or physical therapy or massage may be helpful? Stretches, perhaps? Have you tried any of these approaches? 

 

The reason some of these approaches may work is that communication between muscles and the brain is a double way street so to speak. Yes, your brain may be sending the wrong signals to the muscles due to WD, but if you don't try to do anything and send any other signals back, then it may take longer to correct. But if you try to work it out, stretch, exercise as you can, try moving it out, then that may normalize things faster. Sorry I know this explanation is not scientific but it does make sense to me. I recently started employing this same approach with anxiety and it seems to work really well. 

 

I wish you all the best in your recovery! Sending lots of virtual hugs your way!

[SandCastle]

Hi @HealthHopeHappiness I see that you’re going through a tough time now. I remember last year when twitching was my absolute most worrisome symptom, I would go through times where it would get better and less noticeable for a week or so and then it would come back worse for a month. Then it would level out so it was consistent, but not getting worse, and then it would get way worse. I never really had a break from twitching for more than a few days over the course of 8 or 9 months if I remember right. Then it just stopped for a few months in the December through February range and I thought I was finished with that symptom. Then allergy season hit and it came back hard. Now I’m about 13 to 14 months into withdrawal and even though I’ve had relapses with other symptoms, the twitching has been much less obtrusive lately and I’m only getting it occasionally. I remember being in the same place you are, trying to find a story I could relate to so I could stop thinking it was something else. I hope it helps, however little, to know that it can go from bad to worse to better to way worse and still get better again after all that.

[HealthHopeHappiness]

17 hours ago, SandCastle said:

Hi @HealthHopeHappiness I see that you’re going through a tough time now. I remember last year when twitching was my absolute most worrisome symptom, I would go through times where it would get better and less noticeable for a week or so and then it would come back worse for a month. Then it would level out so it was consistent, but not getting worse, and then it would get way worse. I never really had a break from twitching for more than a few days over the course of 8 or 9 months if I remember right. Then it just stopped for a few months in the December through February range and I thought I was finished with that symptom. Then allergy season hit and it came back hard. Now I’m about 13 to 14 months into withdrawal and even though I’ve had relapses with other symptoms, the twitching has been much less obtrusive lately and I’m only getting it occasionally. I remember being in the same place you are, trying to find a story I could relate to so I could stop thinking it was something else. I hope it helps, however little, to know that it can go from bad to worse to better to way worse and still get better again after all that.

This is so reassuring @SandCastle. Thank you for responding when I know you’re going through a hard time right now too. I know all of our stories are going to be different and no one is a carbon copy of anyone else but sometimes it helps to hear someone has gone through similar. I have become fixated on the twitching, my husband is sick of hearing about it I think, but it’s so so hard to ignore. Last night I tried to do some yoga to see if it would help but I was so distracted by my feet twitching away during it. It’s like they are buzzing/twitching constantly and the nerves are so sensitive. Did you find anything worked for you to reassure yourself with this symptom? It’s taking me all my power not to waste more money on another neurology consultation!! I’m really not in a position to spend anymore. Thanks again for your support. X 

[HealthHopeHappiness]

19 hours ago, Surviving82 said:

@HealthHopeHappiness, hi friend. I am very sorry that you are going through this 😞 I wish I could be helpful to ease your symptoms. I never experienced twitches or muscle weakness in my own WD (at least not yet), however it makes sense (as some people on here reported) that mild exercise or physical therapy or massage may be helpful? Stretches, perhaps? Have you tried any of these approaches? 

 

The reason some of these approaches may work is that communication between muscles and the brain is a double way street so to speak. Yes, your brain may be sending the wrong signals to the muscles due to WD, but if you don't try to do anything and send any other signals back, then it may take longer to correct. But if you try to work it out, stretch, exercise as you can, try moving it out, then that may normalize things faster. Sorry I know this explanation is not scientific but it does make sense to me. I recently started employing this same approach with anxiety and it seems to work really well. 

 

I wish you all the best in your recovery! Sending lots of virtual hugs your way!

Thank you for your reply. I have tried exercise, acupuncture, chiropractor and massage. Nothing has helped as yet. I find that exercise in particular really worsens the symptoms but I will persevere. I’m glad you haven’t been bothered with weakness or twitching and I hope that continues. Wishing you well on your recovery. Virtual hugs back to you too. X 

[HealthHopeHappiness]

@SandCastle I think I remember you mentioning you had ‘restless hand syndrome’ at some point during WD. That is how I would describe the sensation in my hand/thumb for the last couple of months. It’s driving me mad. How did this feel for you? X

[SandCastle]

Hi @HealthHopeHappiness The restless feeling I had was more in my arms and made me wonder if there was such thing as restless arm syndrome. It felt just like when I had RLS when pregnant but in my arms. I searched around and found that it may have been some kind of parkinsonism (not Parkinson’s disease). What I had in my thumb and parts of my hands was more of what felt like a pulling sensation. It’s kind of hard to describe, but it felt like something was tugging on the muscles, or maybe like there was a ripple through the muscle or something. It’s actually one of the things that came back when I started my latest round of symptoms, but now that you bring it up, I’m realizing it’s probably been gone for a week or so. I hated this feeling, along with anything that made me feel like my muscles were either not cooperating or were doing things on their own outside of my control, so I understand where you’re coming from.

[HealthHopeHappiness]

On 7/9/2021 at 1:21 AM, SandCastle said:

Hi @HealthHopeHappiness The restless feeling I had was more in my arms and made me wonder if there was such thing as restless arm syndrome. It felt just like when I had RLS when pregnant but in my arms. I searched around and found that it may have been some kind of parkinsonism (not Parkinson’s disease). What I had in my thumb and parts of my hands was more of what felt like a pulling sensation. It’s kind of hard to describe, but it felt like something was tugging on the muscles, or maybe like there was a ripple through the muscle or something. It’s actually one of the things that came back when I started my latest round of symptoms, but now that you bring it up, I’m realizing it’s probably been gone for a week or so. I hated this feeling, along with anything that made me feel like my muscles were either not cooperating or were doing things on their own outside of my control, so I understand where you’re coming from.

Thank you, that sounds like what I’m experiencing. Keep having an urge to move my arms and if I don’t then my hand twitches or the muscles feel like they are pulling/moving on their own. Especially at the base of my thumb. Isn’t it weird how we are experiencing many of the same, very strange, symptoms. How are you doing these past few weeks? I hope things get better for you soon xx  

[SandCastle]

@HealthHopeHappiness Yes, it’s so weird how similar our experiences are! I’m sure that means there are a bunch of other people out there going through the same thing that haven’t stumbled across this site or put two and two together. It took me awhile to realize this was related to the meds (well it took me starting and stopping twice to see the pattern) and even after I figured it out, it probably took me several months to find this site. I really feel for the people still desperately trying to get a diagnosis. I’m still having trouble, and lately I’m having as many mental problems as physical, like very poor memory and inability to find the correct words when speaking. I try to remind myself that I’ve been through all this before and got better so it will happen again, but I’ve also read the horror stories where someone who has recovered uses a nasal spray for 3 days and their symptoms return for a year. I’ve maybe had a good day here and there, but I’ve mostly been in this relapse for somewhere around two months. If I have 3 good days in a row, I’ll come back here and celebrate/brag 😂.

[HealthHopeHappiness]

I ended up going for a follow up with my neurologist tonight as my symptoms are so unbearable and I was convinced something else was going on. Apparently not. My clinical exam was normal. He recommended I start a low dose Clonazepam to try and ease the muscle twitching and tension. I said no way. I am guessing I am right in saying this?! I have no experience of benzos but from what I’ve read on here my gut said stay well away? Any help appreciated. X  

[HealthHopeHappiness]

On 7/12/2021 at 6:26 PM, SandCastle said:

@HealthHopeHappiness Yes, it’s so weird how similar our experiences are! I’m sure that means there are a bunch of other people out there going through the same thing that haven’t stumbled across this site or put two and two together. It took me awhile to realize this was related to the meds (well it took me starting and stopping twice to see the pattern) and even after I figured it out, it probably took me several months to find this site. I really feel for the people still desperately trying to get a diagnosis. I’m still having trouble, and lately I’m having as many mental problems as physical, like very poor memory and inability to find the correct words when speaking. I try to remind myself that I’ve been through all this before and got better so it will happen again, but I’ve also read the horror stories where someone who has recovered uses a nasal spray for 3 days and their symptoms return for a year. I’ve maybe had a good day here and there, but I’ve mostly been in this relapse for somewhere around two months. If I have 3 good days in a row, I’ll come back here and celebrate/brag 😂.

I am so sorry to hear you are having mental and physical symptoms. It’s so unfair. I really hope you can come on here and brag about 3 good days in a row. I’ll be cheering you on! I totally know what you mean about the difficulty speaking and remembering words. There have been a few times since returning to work where I have completely taken a blank when saying something or when saying a staff member’s name. It is so anxiety provoking which only makes it worse! X

[Hanna72]

Hi @HealthHopeHappiness

9 minutes ago, HealthHopeHappiness said:

Apparently not. My clinical exam was normal.

That’s great news.

About the benzos you were very wise to refuse them in my opinion.

10 minutes ago, HealthHopeHappiness said:

I am guessing I am right in saying this?! I have

Yes it’s your body and your decision entirely. Knowledge is power and you used it for your own well-being.

Hang in there, all my best to you.

[siderale]

Hello! I read through your thread a bit. It is so distressing to feel unlike yourself, I hope you get some relief soon.

 

15 hours ago, HealthHopeHappiness said:

He recommended I start a low dose Clonazepam to try and ease the muscle twitching and tension. I said no way. I am guessing I am right in saying this?! I have no experience of benzos but from what I’ve read on here my gut said stay well away?

Like Hanna said, it's your decision! Benzos can be helpful at a time but it's very high risk for sometimes no relief at all. I take some, but only in "extreme" cases of horrible days, and it helps a bit but it's like putting a bandaid on an open wound. They can be highly addictive and considering how sensitive our brains are the best thing is to either stray away from them as long as we can.

 

Regarding RLS (or RHS!) I never experienced it myself, however my mom does (and she has terrible GERD too!). She is taking fluoxetine and other medication for GERD.

When she describes RLS, it's much like what you describe here, for her it's especially strong during the evening and at night. She is taking a medication for it that works wonders but I'm not sure I should recommend anything, since it also has some secondary effects albeit minimal compared to RLS. And ... Before this she tried benzos for RLS it didn't help at all. Worsened things, even. I believe RLS is stronger than "just" muscle restlessness. It's awful and I hope it eases off for you.

 

Good luck with everything, crossing fingers that you get a window soon. It's reassuring if your neurological exams are all clear. Health anxiety when dealing with WD definitely is the worst, I can relate!!

[HealthHopeHappiness]

On 7/13/2021 at 7:13 PM, Hanna72 said:

Hi @HealthHopeHappiness

That’s great news.

About the benzos you were very wise to refuse them in my opinion.

Yes it’s your body and your decision entirely. Knowledge is power and you used it for your own well-being.

Hang in there, all my best to you.

Thank you, that’s really kind xx

[HealthHopeHappiness]

On 7/14/2021 at 10:09 AM, siderale said:

Hello! I read through your thread a bit. It is so distressing to feel unlike yourself, I hope you get some relief soon.

 

Like Hanna said, it's your decision! Benzos can be helpful at a time but it's very high risk for sometimes no relief at all. I take some, but only in "extreme" cases of horrible days, and it helps a bit but it's like putting a bandaid on an open wound. They can be highly addictive and considering how sensitive our brains are the best thing is to either stray away from them as long as we can.

 

Regarding RLS (or RHS!) I never experienced it myself, however my mom does (and she has terrible GERD too!). She is taking fluoxetine and other medication for GERD.

When she describes RLS, it's much like what you describe here, for her it's especially strong during the evening and at night. She is taking a medication for it that works wonders but I'm not sure I should recommend anything, since it also has some secondary effects albeit minimal compared to RLS. And ... Before this she tried benzos for RLS it didn't help at all. Worsened things, even. I believe RLS is stronger than "just" muscle restlessness. It's awful and I hope it eases off for you.

 

Good luck with everything, crossing fingers that you get a window soon. It's reassuring if your neurological exams are all clear. Health anxiety when dealing with WD definitely is the worst, I can relate!!

Sorry to hear your mum suffers from RLS too, it’s awful. 
 

It is tempting re the benzo on really bad days. I sometimes take propranolol if my anxiety is particularly bad so will just stick to this for now. 
 

It is reassuring to hear you can relate to the health anxiety, but I am sorry you’ve experienced it too. 
 

Thanks for taking the time to reply xx

[HealthHopeHappiness]

Has anyone had a general anaesthetic during WD? I am due to have surgery on 30th July and am terrified it is going to make my symptoms even worse. Is there any specific anaesthetic I can ask for which is gentler on the CNS? Or anything in particular I should avoid? Not sure if there is a separate thread for this. 

[HealthHopeHappiness]

I am so sensitive to touch right now it is driving me mad. Just documenting it here as it helps. I can feel a horrible sensation on my skin and when I look at it there is the tiniest little speck of fluff or something from my clothes. If a little hair from one of my dogs lands on my skin it makes me jump out my skin! Has anyone else been hypersensitive to touch during WD? X 

[Rosetta]

Yes, me.  I couldn’t stand a breeze on my skin, hair touching my face, hugs — just about any touch was too much.

[SandCastle]

@HealthHopeHappiness This was so bad for me at one point. My aunt once put her hand on top of mine while we were having a conversation and I wanted to jump, and I couldn’t stand the feeling of my jeans swishing against my lower legs when I walked. Also, I remember having my legs propped up on an ottoman and my daughter leaned against my legs while she was watching a movie and I had to hurry and put my legs down. I don’t remember hair setting me off but fabric was a nightmare! This was a long time ago for me, and I hope this never comes back, so I’m really sorry you’re going through this now!

[HealthHopeHappiness]

@Rosetta @SandCastleim glad to hear I’m not the only one but sorry you’ve both experienced it too. I tried searching the site but not many responses came up. It’s a horrible feeling and puts me on edge. As soon as anything touches me I jump and get an adrenaline rush. Today is 8 months since I CT off Sertraline/Zoloft. Can’t believe I am still feeling as bad as I did at the start. 
 

It can feel so lonely going through this but it really helps having lovely people like you two on this site. Thanks 💕

 

Thinking about you both. Will pop by your threads to see how you’re doing xx

[Strugglingmama]

@HealthHopeHappiness

 

i came across your thread. My sister was never on antidepressants but she has a condition called benign fasciculation syndrome. It made her quite anxious. She did nerve testing etc with neurology to rule out more serious things. It drives her a bit mad to this day but she’s better able to cope now. It travels to different areas of her body, can be intense cramping for months then resolve. Just something to look into! Also, if it’s RLS making sure you aren’t iron deficient is important and same with b12. 
 

if this has already been said to you, sorry for the repeat! Hope you feel better soon! 

 

 

[HealthHopeHappiness]

6 hours ago, Strugglingmama said:

@HealthHopeHappiness

 

i came across your thread. My sister was never on antidepressants but she has a condition called benign fasciculation syndrome. It made her quite anxious. She did nerve testing etc with neurology to rule out more serious things. It drives her a bit mad to this day but she’s better able to cope now. It travels to different areas of her body, can be intense cramping for months then resolve. Just something to look into! Also, if it’s RLS making sure you aren’t iron deficient is important and same with b12. 
 

if this has already been said to you, sorry for the repeat! Hope you feel better soon! 

 

 

I have heard of BFS after making the mistake of googling muscle twitching (before I realised it was linked to WD). Sorry to hear your sister suffers from it, it’s so anxiety provoking. I never suffered from anything like that before taking SSRIs, it only started after stopping Mirtazapine/starting Paroxetine. I do have low ferritin and take iron for that, my B12 is within normal range. Thanks for getting in touch xx 

[Rosetta]

It will resolve eventually.  I’m sorry you are struggling so much.  Eight months is a long time, I know.  I was very sensitive to magnesium.  Instead of taking the whole dose at once, you could get the kind that you can dissolve in water.  Then, you sip it all day or take larger drinks of it throughout the day.  I didn’t like the taste.  You can make an oil fir your skin out of magnesium, as well.  I’ll find the recipe for you, if you ask.  I can’t do that right now.
 

I’ll be thinking of you.  Rosetta

[HealthHopeHappiness]

On 7/21/2021 at 11:26 AM, Rosetta said:

It will resolve eventually.  I’m sorry you are struggling so much.  Eight months is a long time, I know.  I was very sensitive to magnesium.  Instead of taking the whole dose at once, you could get the kind that you can dissolve in water.  Then, you sip it all day or take larger drinks of it throughout the day.  I didn’t like the taste.  You can make an oil fir your skin out of magnesium, as well.  I’ll find the recipe for you, if you ask.  I can’t do that right now.
 

I’ll be thinking of you.  Rosetta

Thank you, I’m thinking of you too xx

[HealthHopeHappiness]

Can any of the moderators @Shep point me in the direction of threads about general anaesthesia during WD? I don’t want to start a new thread if there are already ones created, but I can’t find them. I’m really worried that having general anaesthetic next week is going to set me back to square one. Is there anything I should be requesting/avoiding? Thank you.