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Briskate: My first post. Please help me!

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Briskate
Posted (edited)

Hello & thank you to anyone reading this.

 

I am trying to find out if anyone knows what damage the antidepressants I was given have done to me. I have tried 4 different types all which made me very unwell. The reason I started them was because 1.5 years after having breast cancer aged 35 I woke up one day with severe debilitating fatigue which left me bedbound, along with ringing in the ears, weakness and dizzy. (Up until this point 1.5 years later I had been completely fine following the chemotherapy). I have now been bedbound for 4 years with this undiagnosed condition and as the years have continued I decided to try antidepressants to try and take away the anxiety of my situation. 

 

I have tried citalopram, pregabalin, prozac and then mirtzapine.

 

All had severe bad effects so I tapered off & stopped taking them. The effects didn't seem to be the general side effects you read about online but instead it made my symptoms I've listed above 100 times worse. The ringing in my ears increased along with the fatigue. At one point I was so weak on them I could no longer walk and felt like I would collapse on standing.

I tried the 4 types I've listed in desperation one after each other hoping that one would work, but i feel that maybe after trying each one my symptoms never returned to how they were before I started it and I've just got worse and worse and maybe never recovered from taking them. The last one I took was mirtzapine which I stopped taking 5 months ago now (Managed to take it for 3 months, it made my fatigue so much worse and I slept for 13 hrs a night so I tapered off slowly) but when I started to come off it every symptom increased and now 5 months later I still feel terrible. Fatigue, ringing in ears & weakness worse than ever before.

Could anyone tell me if Antidepressants can do this? Make you feel unwell for this long after coming off them? I don't understand what has happened!

 

My doctor has suggested I try Agomelatine telling me it has no side effects or withdrawal effects. I'm really scared it might make me even worse but I desperately want to try something as the anxiety of being bedbound like this forever is so bad. Any opinions greatly received. 

Thank you so much! 

Edited by Shep
added username to title

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Gridley

Welcome to SA, Briskate.

 

Regarding the agomelatine, doctors know nothing about withdrawal, and all antidepressants have side effects.   I can't pick up the link for some reason, but please Google SurvivingAntidepressants.org tips for tapering off agomelatine   You will see that there are significant withdrawal issues associated with this drug.  I would be extremely leery about starting on this drug, especially given the difficulties you've had with other antidepressants.  The following quote is from our thread on agomelatine, written by Altostrata, founder of this site:

 

"Coincidentally, I just talked to a knowledgeable doctor about Valdoxan. He said it's an agonist, which means it will have dependency and withdrawal issues.

I shudder to see downregulation of and damage to melatonin receptors. That withdrawal is going to be very, very hard."

 

Antidepressants can definitely make you unwell for quite a long time--longer than five months, I'm afraid-- after coming off them, especially if you tapered too fast (we recommend tapering no faster than 10% of current dose every four weeks) and are in withdrawal from the drug or if you had an adverse reaction to the drug.  The symptoms you describe are typical withdrawal/adverse reaction symptoms.   You will heal but it will take time.  


But I only took it for a Week

 

 
 
These explain healing from withdrawal really well.  Much the same process takes place when there has been an adverse reaction to a drug.

 

 

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 
When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.
 
Here are some non-drug coping skills for dealing with anxiety.
 
We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.
 
To give members the best information, we ask them to summarize their medication history in a drug signature -- drugs, doses, dates, and discontinuations, including how long you were on each drug, and whether you tapered (and for how long) or quit cold turkey.
 
 
This is your Introductory topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

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Briskate

Thank you so much for your reply. I really appreciate it and for all the information. Sorry for my slow reply. I'm bedbound and find it hard to keep my eyes open long enough to write. 

I have now after reading cancelled my prescription of Agomelatine which I was going to try as I don't want to take the risk of being sicker than I am currently. From reading on this website I'm wondering now if part of my illness is actually from quitting Mirtzapine 5 months ago and I have withdrawal symptoms on top of my illness. Especially my head which feels so disoriented and the dizziness and my body which feels like its shaking internally. I just presumed my undiagnosed illness had got worse before but it has got worse ever since I came of Mirtzapine so maybe that is it. So lucky to find this website before I took even more drugs!

Thanks again for all the advice!

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Briskate

I'm 5 months into what I think are severe symptoms from antidepressant withdrawal and 3 weeks ago started taking the supplement 5 HTP and the herb ashwagandha (for stress). 

I've realised from joining this website last week that maybe I shouldn't be taking these - is that right??

No idea if they are helping or not as I just feel physically unwell, however I felt like this before I started them.

If so do I need to taper off the 5 HTP slowly? Or as it's a supplement can i just stop?

Thanks for any help or advice. Much appreciated 😁

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Sassenach

Hi Kate

 

I am really sorry to hear of your situation.

7 hours ago, Briskate said:

I'm wondering now if part of my illness is actually from quitting Mirtzapine 5 months ago

 

On 10/6/2019 at 4:49 PM, Briskate said:

tapered off slowly

How slowly did you taper?

The symptoms you describe are almost certainly W/D ( withdrawal ).

How quickly did they start after your last Mirt. dose?

On 10/6/2019 at 4:49 PM, Briskate said:

this undiagnosed condition

It is rare in the UK for a condition to be undiagnosed for 4 years.

Are your doctors still investigating?

 

Sassenach

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Briskate

Thank you for your reply. To be honest I can't quite remember how fast I tapered. However I remember I was on 30mg on mirtzapine and the fatigue was so intense that I couldn't bear it (I had chronic fatigue before I started it anyway, but it made it so much worse) I think the problems began straight away when I dropped the dose which I may have done just over a period of a few days from 30mg to 15mg. I can't remember how long after that I stayed on 15mg but probably just 2 weeks maybe lowering the dose over that time till I was on nothing. I didn't know that I was meant to probably do it slower? No one warned me!! 

I went from 60% bedbound to now 90% bedbound and have now stayed this way for the last 5 months. Mainly due to extreme fatigue and weakness in my whole body. My body feels like its shaking internally constantly.

I don't know how much of this is withdrawal as I had these symptoms before I started the drugs, however they have got much worse! 

20 hours ago, Sassenach said:

 

Are your doctors still investigating?

 

Sassenach

No they aren't still investigating. I've had so many tests and see so many doctors. No answers. They won't help anymore. So I've been left this sick for 4 years now. I believe it has to be something to do with the harsh chemotherapy I was given for cancer aged 35 as the mystery illness started 1.5 years after treatment. No cancer doctor will acknowledge it though 😥 Just to be clear these symptoms in the beginning started before I even took any antidepressant so I know that's not what this is, but I'm wondering if I now have withdrawal symptoms on top of it.

Thanks for reading 😁

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Sassenach

Hi Kate

 

As Gridley said above you are almost certainly suffering W/D symptoms because of your fast taper off the drug.

We would normally recommend a low dose reinstatement however 5 months is a long time.

I cannot imagine being bedbound and suffering these symptoms.

You have two choices, toughing it out or trying a very low dose reinstatement to try and lessen the symptoms.

The link below will give you info. on reinstatement.

about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

Under no circumstances attempt reinstatement without referring back to us.  

You do not need to answer this question.

Were you given blood or transfusion while in hospital?

Please check out the link above and give me your thoughts.

 

Sassenach

 

 

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Briskate

Thanks for your reply. No I wasn't given blood or a transfusion.

No I wouldn't want to put anymore drugs into me again, so I'll just have to tough it out. I mean I came off them because I felt more fatigued/unwell on them so it's not like if i start taking them again I'll get much relief! So I think I'll just try and keep going drug free as it's been 5 months now. I've noticed the more stressed I feel about my situation being unwell and bedbound the more unwell I seem to feel. 

I really hope it doesn't last too long. I only took them for a few months.....whether that makes a difference or not I'm unsure. 

Thanks for your help. Much appreciated 😁

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Sassenach

I think you have made the right decision, but we have to offer.

There are a lot of members on here who are happy to chat and make friends.

If you have any further questions please contact us.

I wish you well.

 

Sassenach

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Gridley
20 minutes ago, Briskate said:

No I wouldn't want to put anymore drugs into me again, so I'll just have to tough it out.

 

Briskate,

 

Have you taken a look at the links I gave you in my first reply to you?  The non-drug coping skills for anxiety can be really helpful in dealing with symptoms.  Also, consider the magnesium (glycinate is a good form) and the omegas, which can be very calming.  

 

Here is another link to take a look at.  Check out these coping skills and see which you think might be beneficial to you.

 

Non-drug techniques to cope

 

 


 

 

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Briskate

Thank you. I will look at all of this 😀

 

I just wanted to ask if anyone knew if I could take the supplement 5 HTP? I started taking it 3 weeks ago before I joined this website. If I need to come off it do I need to taper off slowly or not because it's only a supplement?

Thanks again. 

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Guilietta

Hello Bristake,

 

Just stopping by to welcome you to SA.  I saw that you are a newcomer here. ;) I am terribly sorry that you are bedbound and so incapacitated with symptoms. There are other members who spend a lot of time bed bound so you are not alone.

 

I have been experiencing prolonged WD from a very quick or CT from cymbalta/duloxetine in December 2018.  I am glad you are staying any from more drugs. I have been on several SSRIs, a tricyclic, clonazepam - and I wish I had therapy not them.  Cymbalta is the worst I am dealing with by a long shot and it is a slow recovery. 😳

 

Please reach out any time you are feeling up to it.  You will find a lot of friends here. I have found their support immensely helpful and the help of the moderators indispensable.

 

Giuilietta

 

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Briskate
1 hour ago, Guilietta said:

Hello Bristake,

 

Just stopping by to welcome you to SA.  I saw that you are a newcomer here. ;) I am terribly sorry that you are bedbound and so incapacitated with symptoms. There are other members who spend a lot of time bed bound so you are not alone.

 

I have been experiencing prolonged WD from a very quick or CT from cymbalta/duloxetine in December 2018.  I am glad you are staying any from more drugs. I have been on several SSRIs, a tricyclic, clonazepam - and I wish I had therapy not them.  Cymbalta is the worst I am dealing with by a long shot and it is a slow recovery. 😳

 

Please reach out any time you are feeling up to it.  You will find a lot of friends here. I have found their support immensely helpful and the help of the moderators indispensable.

 

Giuilietta

 

Thank you for your kind message.

 

Sorry to hear you are struggling too. I would write more but I'm feeling so unwell today. I really appreciate your message and I really hope things look up for you soon 

 

If anyone else knows about taking the supplement 5 HTP that I asked about in my  previous message I would be very keen to hear from them. Best wishes 

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Guilietta

Hello Briskate,

 

I am healing - ahead on the curve that a lot of people on SA. Whenever you are up to - feel free to drop by. 

 

22 hours ago, Briskate said:

I believe it has to be something to do with the harsh chemotherapy I was given for cancer aged 35 as the mystery illness started 1.5 years after treatment. No cancer doctor will acknowledge it though 😥

 

Have you considered that any underlying symptoms may be an auto-immune disease? 

 

Based on personal, not medical, opinion (based on anecdotal evidence) that following chemotherapy some people may get auto-immune diseases. One invidual I know - after about 1 year post bilateral total masectomy, etc., began exhibiting the signs of rheumatoid arthritis and fatigue. They have worsened over time. All of her lab results are negative for RA.  😕

 

MDs will never own up to their errors. They also  cover up for each other so finding the truth (or proving it certainly) remains eluslive. 

 

Here is a link on 5 HTTP:

 

https://www.survivingantidepressants.org/topic/9933-5-htp-5-hydroxytryptophan-and-l-tryptophan/

 

I am not taking it.

 

Feel free when up to it.

 

 

 

 

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Sassenach

Hi Kate

 

Regarding 5HTP.

If it is helping to make symptoms more bearable then is ok to take it.

If you feel it is not helping it should be tapered to avoid upsetting your CNS further.

What dose are you on currently?

 

Sassenach

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Briskate
3 hours ago, Guilietta said:

Hello Briskate,

 

I am healing - ahead on the curve that a lot of people on SA. Whenever you are up to - feel free to drop by. 

 

 

Have you considered that any underlying symptoms may be an auto-immune disease? 

 

Based on personal, not medical, opinion (based on anecdotal evidence) that following chemotherapy some people may get auto-immune diseases. One invidual I know - after about 1 year post bilateral total masectomy, etc., began exhibiting the signs of rheumatoid arthritis and fatigue. They have worsened over time. All of her lab results are negative for RA.  😕

 

MDs will never own up to their errors. They also  cover up for each other so finding the truth (or proving it certainly) remains eluslive. 

 

Here is a link on 5 HTTP:

 

https://www.survivingantidepressants.org/topic/9933-5-htp-5-hydroxytryptophan-and-l-tryptophan/

 

I am not taking it.

 

Feel free when up to it.

 

 

 

 

Thank you I will have a read on all of this. 😁

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Briskate
Just now, Briskate said:

Thank you I will have a read on all of this. 😁

I think (but not 100%) that an autoimmune disease would have been checked for by my GP. I've had so many blood tests!

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Briskate
2 hours ago, Sassenach said:

Hi Kate

 

Regarding 5HTP.

If it is helping to make symptoms more bearable then is ok to take it.

If you feel it is not helping it should be tapered to avoid upsetting your CNS further.

What dose are you on currently?

 

Sassenach

The 5 HTP tablets I take are 200mg and I've been taking 2 tablets each evening.

 

With my medical history been able to not tolerate AD's and a variety of other medication maybe I should stop. I can't say they have made me feel better or worse. I feel so unwell everyday even before I started taking them so I've no idea if they are helping or not! 

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Altostrata

Welcome, Briskate.

 

Does taking 5-HTP make you feel better or worse? What are the effects? How are you sleeping?

 

We would advise tapering 5-HTP.

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Briskate
5 hours ago, Altostrata said:

Welcome, Briskate.

 

Does taking 5-HTP make you feel better or worse? What are the effects? How are you sleeping?

 

We would advise tapering 5-HTP.

Thanks for your reply!

 

With all my symptoms going on I haven't actually noticed a difference!

 

My sleeping is okay! 

 

I might come off it slowly. Maybe you dont need to taper as slow as a antidepressant?

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Altostrata

What times of day do you take each supplement, at what dosages? What is your symptom pattern before and after you take each of them?

 

That's how you can tell what they're doing. 

 

Yes, you will need to taper 5-HTP, but you can do it faster than a prescribed drug. We have had reports of withdrawal from too-fast tapering. You might try a 10% reduction first to see how it affects you. You might be able to reduce by 10% per week.

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Briskate

Thanks for your reply. I take it an hour before bed as it's meant to help with sleep. Currently taking 400mg (2 x 200mg tablets)

Symptom pattern is consistent throughout day. Bedbound, Chronic fatigue, severe weakness, ringing in ears....to name a few. Can't say I've noticed a difference taking them so I think I'll just try and taper off. Thanks again 😁

Edited by manymoretodays
merged with main introduction

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Briskate

Titled:  Can you take Propranol and other meds during withdrawal?

 

Hello. I've been off Mirtzapine 5 months now. Terrible withdrawal symptoms. Just wondering if it's a bad idea to occasionally have other meds such as propranolol, diazepam (I would only have one of these on a very rare occasion) or even just paracetamol for a headache? Could these make the withdrawal process worse/longer?

 

I was having Phenergan (antihistamine) occasionally some odd days to help with anxiety but recently read it's bad to have in withdrawal from mirtzapine because of mirtzapine being antihistamine too. So I've stopped now. Not sure how true this is though but it worried me! 

 

Many thanks for any help :)

 

Edited by manymoretodays
added title, 2nd introduction merged to first

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manymoretodays

Hi Briskate,

I just merged 2 of your additional introductions back here to your main one. 

Just one introduction per member is our rule, as it keeps all of your information in one place.

 

Have you looked into the magnesium and/or omega 3's yet?  You'll find links to those topics up at the top of this page now, your introduction.   And then the non-drug coping section as well, may help, with the withdrawal, from psychoactive substances.

 

More on the other drugs that you are contemplating can be found pretty simply:

You can go to the Symptoms and Self Care forum:  Use the search box there to see what has been said about these medications that you are now considering. 

Or:  Use your main browser and type in survivingantidepressants.org and then the topic or drug of interest

 

Are you now off the 5HTP?  And how did you taper it?  I'd sure give my nervous system a rest, for a little longer, before trying or adding any other drug, if I were in your shoes right now.  Or situation, I mean.

 

Oh @Briskate, best to you now.  Sounds like you are in the thick of it right now.........desperation and suffering.  It does get better........always.

Love, peace, healing, and growth,

manymoretodays(mmt)

 

 

 

 

 

 

Edited by manymoretodays

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Briskate
19 hours ago, manymoretodays said:

Hi Briskate,

I just merged 2 of your additional introductions back here to your main one. 

Just one introduction per member is our rule, as it keeps all of your information in one place.

 

Have you looked into the magnesium and/or omega 3's yet?  You'll find links to those topics up at the top of this page now, your introduction.   And then the non-drug coping section as well, may help, with the withdrawal, from psychoactive substances.

 

More on the other drugs that you are contemplating can be found pretty simply:

You can go to the Symptoms and Self Care forum:  Use the search box there to see what has been said about these medications that you are now considering. 

Or:  Use your main browser and type in survivingantidepressants.org and then the topic or drug of interest

 

Are you now off the 5HTP?  And how did you taper it?  I'd sure give my nervous system a rest, for a little longer, before trying or adding any other drug, if I were in your shoes right now.  Or situation, I mean.

 

Oh @Briskate, best to you now.  Sounds like you are in the thick of it right now.........desperation and suffering.  It does get better........always.

Love, peace, healing, and growth,

manymoretodays(mmt)

 

 

 

 

 

 

Thank you for all your help. 

 

In the last few days feeling so unwell to the point where I can't even stand up anymore. Obviously I have my unknown fatigue condition and then the antidepressant withdrawal symptoms on top. Hard to know which symptoms are which now! 

I'm still taking the 5 htp but worried this could be making everything worse. I've had bad reaction in the past just to supplements. Really need to know if I should just stop the 5 htp instead of tapering incase I'm actually having a bad reaction to them. Only been taking them a month. 

Would you still taper with a drug/supplement that you are/might be having an adverse reaction too??

If I taper at the pace like some people do with 5 htp it means I'll still have to take them for another month or so which feels way too long if its causing these symptoms. I can't even move and struggling to even make food etc. 

Thank you for any help. Much appreciated 

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Briskate
On 10/11/2019 at 5:27 PM, Sassenach said:

Hi Kate

 

Regarding 5HTP.

If it is helping to make symptoms more bearable then is ok to take it.

If you feel it is not helping it should be tapered to avoid upsetting your CNS further.

What dose are you on currently?

 

Sassenach

Hello Sassenach. 

I am now in a worse situation. I can't even walk anymore, feel so dizzy and I'm so unwell. I've got sicker and sicker the last few days. I don't know what to do about the 5 HTP as I'm in the process of tapering off. Theres a chance I could be having a bad reaction to it which is making me so unwell as I've had bad reactions to supplements before (or it could be another reason- just no way of knowing) I'm wondering if to just stop taking it cold turkey.? Currently on 300mg. 

I know you are meant to taper but do the rules change for that say if you were having a very adverse reaction to something? Surely you would come off it quickly?

Any opinion greatly appreciated.

Thank you very much 

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manymoretodays

Hi Briskate,

On 10/16/2019 at 4:09 AM, Briskate said:

Thanks for your reply. I take it an hour before bed as it's meant to help with sleep. Currently taking 400mg (2 x 200mg tablets)

Symptom pattern is consistent throughout day. Bedbound, Chronic fatigue, severe weakness, ringing in ears....to name a few. Can't say I've noticed a difference taking them so I think I'll just try and taper off. Thanks again 😁

 

On 10/6/2019 at 9:49 AM, Briskate said:

All had severe bad effects so I tapered off & stopped taking them. The effects didn't seem to be the general side effects you read about online but instead it made my symptoms I've listed above 100 times worse. The ringing in my ears increased along with the fatigue. At one point I was so weak on them I could no longer walk and felt like I would collapse on standing.

 

4 hours ago, Briskate said:

Only been taking them a month. 

 

When did you do the reduction from 400 mg to 300 mg?  If the worsening occurred after the first night of your reduction, you might consider going back up to 350 mg of 5HTP.

It's possible the jolt of the reduction, was too much for your fragile nervous system.  Yet, I don't really know Briskate. 

 

Is your sleep generally good?

 

So unfortunate, that you suffered the later consequences to your Cancer treatment?  Did you get chemotherapy then?   I did a brief scan and yes, there are reports of illness like yours, a year and a half after chemotherapy.

 

Oooh sweetie.  Who is treating you now?  Your general practitioner, or are the specialists still involved?

 

L, P, H, and G,

(((((((Briskate)))))))

mmt

 

 

 

 

 

 

 

 

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