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I do not see a way out


Eleven10

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Hi. I'm 40years old.

20 years ago about a year after the birth of my daughter I started to feel unwell. I was exhausted all the time and after lots of tests the dr decieded I was depressed and put me on venlaflaxine. Maybe I was a little depressed as I did feel a little better but the bouts of exhaustion continued. Venlaflaxine for some people is a horrible drug to get off and after 5 years and many attempts I was given Prozac to help wean off. This helped and I took Prozac 20mg for 9 years, it was never suggested that I came off the drugs and to be honest I felt pretty good so I just took the Drs advice and carried on. 

In Early 2014 I woke up one morning and thought I feel pretty good I'm coming off this poison and on my Drs advice I tapered over 2 weeks. A two week taper after 15 years on drugs was absolutely ridiculous but I trusted the gp. I became very irritable after a few weeks and I could not sleep well but I carried on as I thought it would come good. It got worse and worse and within 3 months the withdrawal symptoms became unbearable and I begged to die. I had horrific akathesia and I could not sit still and my mind felt like it boiling in my brain. 

To cut a long story shorter, this has continued at varying levels ever since, I initially tried sertraline which made everything worse, I then tried mirtazapine which kept me awake all night. I eventually got refered to dr David Healy who diagnosed protracted ssri withdrawal syndrome, he basically said there is no reliable treatment but if I was very suicidal I could try gabapentin and clonidine but I was too scared. 

My main symptoms now are severe depression a 100 times worse than all those years ago, I also have a very stiff neck , chronic fatigue, tinnitus, migraine headaches.

what I'd like to know is if anyone else had similar problems and if they managed to get back on ssris? 

I feel completely hopeless for the future, I have no idea how to get better. My original condition seems like a minor irritation compared to this 

 

 

 

 

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Eleven10, 

I am so sorry you are experiencing this! I don't know much about ssri withdrawals, but wanted to tell you not to give up. I suffer from PTSD, migraines, depression and anxiety. A doctor I really like changed my migraine medication years ago. I've been on a few different ones since then, but nothing works anymore. I don't recall why my doctor changed the meds to begin with, but I am very disappointed about all that now. I think he changed them just to try newer meds, even though what I was on was working for me! 

I have experienced a lot of trauma and have hypothyroidism as well. You might want to get your thyroid checked as well if you haven't already. Both t3 and t4, I think it is, are important to have checked. Thyroid issues can wreak havoc on so many of our bodies'  systems! 

There are a lot of people with thyroid problems in certain parts of the US due to depletion of minerals in the soil from when glaciers went toward the south.

I am still fairly certain I will need to be on some sort of antidepressant for the rest of my life. If I can change to something natural I would love to! 

I hope this is helpful for you! I will check back later tonight : )

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Hi, I have't experienced this or even heard of it. I'm just curious, why would you want to go back on SSRIs if they caused this? Why not try another class of medications? For example Lamotrigine can be used for depression and migranes. It's an anti-convulsant and most people seem to report few side effects. It shouldn't aggravate the brain as SSRIs can do. I hope you find some answers, good luck. 

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Thanks lumi.

I am in the uk and you cannot just ask for a med to try, I have suggested lamotrigine a few times but they will not prescribe. I don't want to take ssri at all I just want to feel better and relieve this terrible depression 

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Yes, the doctors are asked to follow the Nice guidelines, which are not solely based on how effective the drug itself could be, but cost is also taken into consideration.

Out of all treatments available, the SSRIs have far more evidence of them being effective for depression. Lamotrigine for unipolar depression and migrane is 'off label'.

An example of the Nice guidelines:-

Quote

1.8.1.9The following strategies should not be used routinely:

  • augmentation of an antidepressant with a benzodiazepine for more than 2 weeks as there is a risk of dependence

  • augmentation of an antidepressant with buspirone*, carbamazepine*, lamotrigine* or valproate* as there is insufficient evidence for their use

  • augmentation of an antidepressant with pindolol* or thyroid hormones* as there is inconsistent evidence of effectiveness[16].

 

Note it doesn't say it should never be used. You are not a routine case and if you really want to try it you could even get an individual case review which may go beyond the doctor who is treating you. 

Good luck

 

Reference: https://www.nice.org.uk/guidance/cg90/chapter/1-Guidance#sequencing-treatments-after-initial-inadequate-response

 

Edited by Lumi
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Hi.

Iv had cbt but it didn't help and the therapist said I was too unwell to get much benefit. 

The problem is except for Dr Healy none of the psychs Iv seen recognise protracted withdrawal so are unwilling to try different things. 

The insomnia is terrible I'm restless all night since coming off ssris and when I do get a little sleep it's light and dreamy with no substance. 

After all Iv been through I still not against meds, they help a lot of people but the failure of Drs to acknowledge that for some people they can cause untold pain and suffering is beyond me. There is no much info and accounts of similar things happening that I don't know how they can keep saying that they are perfectly safe for everyone for as long as they want. 

Most people will never go through what I have but it's awful to think what Iv lost and how unwell Iv become 

I just don't know if to try again and stay on them forever and hope for the best or carry on hoping things will improve 

 

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1 hour ago, Eleven10 said:

 

I just don't know if to try again and stay on them forever and hope for the best or carry on hoping things will improve 

 

Plus there is always the third option which is the meds Dr Healy suggested.

I know you are scared but maybe reconsider taking the plunge, especially if he is the only one who knows about the condition. Personally I'd not be scared of those drugs any more than an SSRI, but I do know what it's like to be scared of meds. 

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On 8/23/2017 at 9:22 PM, Eleven10 said:
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Hi. I'm 40years old.

20 years ago about a year after the birth of my daughter I started to feel unwell. I was exhausted all the time and after lots of tests the dr decieded I was depressed and put me on venlaflaxine. Maybe I was a little depressed as I did feel a little better but the bouts of exhaustion continued. Venlaflaxine for some people is a horrible drug to get off and after 5 years and many attempts I was given Prozac to help wean off. This helped and I took Prozac 20mg for 9 years, it was never suggested that I came off the drugs and to be honest I felt pretty good so I just took the Drs advice and carried on. 

In Early 2014 I woke up one morning and thought I feel pretty good I'm coming off this poison and on my Drs advice I tapered over 2 weeks. A two week taper after 15 years on drugs was absolutely ridiculous but I trusted the gp. I became very irritable after a few weeks and I could not sleep well but I carried on as I thought it would come good. It got worse and worse and within 3 months the withdrawal symptoms became unbearable and I begged to die. I had horrific akathesia and I could not sit still and my mind felt like it boiling in my brain. 

To cut a long story shorter, this has continued at varying levels ever since, I initially tried sertraline which made everything worse, I then tried mirtazapine which kept me awake all night. I eventually got refered to dr David Healy who diagnosed protracted ssri withdrawal syndrome, he basically said there is no reliable treatment but if I was very suicidal I could try gabapentin and clonidine but I was too scared. 

My main symptoms now are severe depression a 100 times worse than all those years ago, I also have a very stiff neck , chronic fatigue, tinnitus, migraine headaches.

what I'd like to know is if anyone else had similar problems and if they managed to get back on ssris? 

I feel completely hopeless for the future, I have no idea how to get better. My original condition seems like a minor irritation compared to this 

 

 

 

 

Hi there

yes I can relate

did a similar stupid dumb thing deciding I was better after 26 years on antidepressants 

now in the worst state of depression I can recall and not feeling the positive effects of resuming Prozac. yet. 

This is hell. It's right here. I hope you get your old anti-depressed state back soon. Really, really.

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1 hour ago, Lumi said:

Plus there is always the third option which is the meds Dr Healy suggested.

I know you are scared but maybe reconsider taking the plunge, especially if he is the only one who knows about the condition. Personally I'd not be scared of those drugs any more than an SSRI, but I do know what it's like to be scared of meds. 

Yes there is that option but my gp won't prescribe gabapentin. I can keep trying but I think they have made their minds up. 

I agree that I shouldn't be any more scared of them, any drug that changed the chemistry of the brain can have severe withdrawal symptoms. I hope one day they can figure out why some of us are more effected than others. 

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35 minutes ago, Annafairlady said:

Hi there

yes I can relate

did a similar stupid dumb thing deciding I was better after 26 years on antidepressants 

now in the worst state of depression I can recall and not feeling the positive effects of resuming Prozac. yet. 

This is hell. It's right here. I hope you get your old anti-depressed state back soon. Really, really.

Good luck. 

You wasn't stupid as you didn't know. Drs are often under the impression that patients just return to their pre medicated selves when they come off meds but that isn't the case, these drugs make changes in the brain that take a lot of time to change back. 

It has been described to me like a trellis growing in the garden, after just a few weeks nothing much will have grown into the trellis but after years and years an intricate set of 'plants' will be dependant on that trellis and you can not just remove it, it can take years to carefully replace things back to how they were. Some Drs say a 2 week taper is fine but it really isn't and it torture for some patients. 

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3 hours ago, Eleven10 said:

Good luck. 

You wasn't stupid as you didn't know. Drs are often under the impression that patients just return to their pre medicated selves when they come off meds but that isn't the case, these drugs make changes in the brain that take a lot of time to change back. 

It has been described to me like a trellis growing in the garden, after just a few weeks nothing much will have grown into the trellis but after years and years an intricate set of 'plants' will be dependant on that trellis and you can not just remove it, it can take years to carefully replace things back to how they were. Some Drs say a 2 week taper is fine but it really isn't and it torture for some patients. 

That description about plants growing on the trellis makes total sense. I'll never forget it. Thank you!

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