Lincoln78: what to do now?

[Lincoln78]

After taking ssri's seroxat then Prozac for almost 16 years for anxiety and some pnd, I went cold turkey in July 2014 by October 2014 I was so ill I wanted to die. December 14 to March 15 were very difficult to say the least I'm not a drama queen and don't like to compare but reading these forums I had it quite bad. April 2015 saw the odd better day and I thought I was turning a corner. I tried to go back to my job on reduced hours but could not do it, the screen was too bright the office too noisy, I struggled to hold myself on a chair, struggled to walk to the water machine, could not write simple emails. Could not make conversation without stuttering, could not remember the name of colleagues I had worked with for 10 years.

 

It is now December 2015, I'm in constant pain in my upper back and neck, I have been diagnosed with Cfs, I was a runner/ skier/ all round athlete with a resting heart beat of 50. I cannot sleep, I lay in bed so tired I struggle to breathe and in half an hour I'm so wired i buzz. I can hear a door slam outside, someone cough in the next room and I feel waves of adrenaline surge over me and I will be awake with the most vile sense of doom until 4 am when I drift into a dreamy drug like sleep until 7, I try to go back but it is impossible.

 

I have tried magnesium, Epsom salts melatonin, diphenhydramine. Nothing works.

 

I eventually found a pychiatrist who believed my problems were drug related. He beloved me he supported me, he has no idea how to treat me.

 

I often find it impossible to sit still my legs are constantly stretching moving spasamimg.

 

I sometimes feel a little cheerier even laugh and joke I even went to a comedy club last week and even though I had trouble supporting myself in the chair it was fun, although I paid dearly from the stimulation with next to no sleep that night. but I'm often so depressed it feels physically painful. I have no doubt I now have clinical depression even though this was never a issue before meds.

 

to be honest I'm lost and any advise would be warmly received.

[bubble]

Hello Lincoln and welcome to SA.

 

I'm glad that you have joined us because I have found so much support here and I know you will benefit from it too.

 

You are far from a drama queen having survived the horrors of cold turkeying two drugs after 16  years of use! You seem to be a very strong person and I believe the worst is behind you. 

 

It's nice that your doctor at least validates you by acknowledging withdrawal. Most doctors don't and just continue to persuade their patients that they had a relapse. Unfortunately there is not a magic bullet that would take all this pain and horror away. But there are little things that bring us comfort as we give our brain the time it needs to heal.Symptoms and self-care

 

I'm sure you will find lots of ideas in our Symptoms and self-care forum. I identify so much with this rawness and sensitivity you describe. I had a hard time accepting that I will for the time being have to reduce stimuli even when they come from such pleasant and innocent activities such as comedy club or in my case spending time with family and friends. But I have accepted now that this is just a temporary situation and not the rest of my life and that I will heal faster if I limit the interaction when I find it too stimulating.

 

I had to reinstate my drugs because I couldn't bear the agony and am now tapering slowly. What I found extremely helpful while waiting to recover from my CTing was reading about how our brain heals. It gave me so much hope and reduced fear and hopelessness. 

 

 The Windows and Waves Pattern of Recovery

 

You might also find this video encouraging: Video: Healing from Antidepressants: Patterns of Recovery

 

We also find Fish Oil and Magnesium  helpful.

 

And finally, although you are not tapering and reinstating after such a long time isn't really an option, we all have our drug history in our signature so that other members can see our context at a glance whenever we post.Please put your Withdrawal History in Signature OR  Complete your Signature from Phone or Tablet

 

Once again welcome. You will find lots of friendly support here

 

Bubble

[nz11]

Welcome Lincoln

wow a CT after 16 years is huge.

Like Bubble i am pleasantly surprised your doc acknowledges this as wdl. was the CT the docs idea ?

 

I have no doubt I now have clinical depression even though this was never a issue before meds.

depression is a wdl symptom

 

Wishing you strength

[Lincoln78]

Thank you bubble and nz11

 

The truth is I would have reinstated in a heart beat if had not been for the experience I had. After completely losing it in October 2014 I saw a emergency dr, I tried my best to get across that this was not my pre medicated state and that my brain felt like it was on fire. I was accidently started on 100mg of sertraline apparently it should have been 50, I became so agitated within hrs after taking It that I pulled chunks of my hair out banged my head against the wall until I was restrained. I was given high doses of benzodiazapines in hospital. After that no matter how bad things got and they got pretty bad I did my best to stay away from doctors I was and still am completely terrified of medication. Before medication I was what my mum describes me as a "worry pot" after my child was born I worried constantly, every sniffle was meningitis it felt that there was danger everywhere. It ended up in me bursting into tears in the doctors office and inevitably coming out with a prescription. They took the worry away helped me relax the world no longer looked so scary.

 

Seroxat was impossibly difficult to get off and after several attempts Prozac saved the day, I suited 20mg a day very well and stayed liked that for 8 years if I happened to mention to my dr any concerns I was assured it was perfectly harmless, I dropped to 10mg and felt absolutely fine. I have no idea what made me just quit, looking back i think it was a careless comment from a friend of mine who picked up the box one day in my house and said " we have no idea how that s@it is rotting people's brains" and the next day I just quit.

 

I'm so glad I found my psychiatrist he listened hard and nodded when I described the feelings. He says for some reason we don't understand yet some people will be very badly effected and become very sensitised to any pychotopic drug. he admits he's at a loss what to do he even suggested ect as a very last resort. He retires next spring which I'm very upset about.

 

I do worry this will never end I have made no progress since April this year. Is it normal to see nothing for so long ? I have had slightly better days but nothing significant. I have just had a ct scan for the constant vertigo and everything was normal. At 36 I feel 96.

[Lincoln78]

Also is the depression permanent ? I feel

My body has stuck in this state and is struggling to get out and onto healing

[nz11]

he even suggested ect as a very last resort.

sorry to say this but the doc just went from hero to zero in my book with this idea.

 

Its a long road back and the drug induced wdl 'd 'will recede in time....we may be talking years. In the meantime its simply a matter of finding ways to hold on and simply surviving it.

To say you have had slightly better days is not an insignificant thing. Its a sign that the small windows  despite closing at times will open again and for longer.

 

there is a success stories thread and that is worth reading in particular i fpund 'lossleaders' story inspirational.

 

your body is healing ...the brain is working 24/7 to right this pharma assault it is going to take time.

[Lincoln78]

Will read that later, thanks.

 

I genuinely think he had my best interest at heart. He suggested it at a particularly dark time when he did not want more meds to be given if hospital was inevitable he seemer genuinely moved by my situation. But I agree etc is brutal.

[Altostrata]

Welcome, Lincoln.

 

You have found the rare psychiatrist in the haystack, who grasps that one might suffer harm from these drugs.

 

You said you tried Epsom salts baths, did you try taking magnesium tablets or powder?

 

Do your symptoms follow any daily pattern? Do you take any other drugs?

 

You may be interested in One theory of antidepressant withdrawal syndrome

[Lincoln78]

Altrostrata, thank you.

 

I have noticed I'm very teary am, and generally some what lighter in the evening, however this is not always the case. Ovulation usually lifts my mood slightly but there is no change in physical symptoms.

 

I will read the theory's as I'm curious as to why withdrawal took 4 months plus to become very bad when seroxat was almost immediate. I understand Prozac half life is longer but 4 months but be related to big changes in the brain. We, as humans have a lot to learn about the brain I think.

 

I take around 4-500 mg of magnesium a day. I take the glycinate as the other upsets my stomach. The Epsom salts bath is pleasant but I have not really noticed much benefit with sleep. I feel totally hyper vigilant at night, almost like I can hear a pin drop and it will set me off for hours. It's a feeling I would not wish on anyone, it has no place in this world, but I accept my situation and no longer cry endlessly about it.

 

The massive morning surges only happen maybe once a week or wven less, they were every morning. But again I have not noticed an improvement in symptoms since they became less.

[Lincoln78]

i take 10mg of propranolol but this has only been for the last two months and I'm stopping it soon as it has not had any effect negative or positive. I also take ibrophen and occasionally diphenhydramine a very low dose as it seems to calm me down slightly. Thank you

[Theon]

I'm curious as to why withdrawal took 4 months plus to become very bad when seroxat was almost immediate. I understand Prozac half life is longer but 4 months but be related to big changes in the brain. We, as humans have a lot to learn about the brain I think.

 

Numerous studies have shown that serotax (paroxetine) causes withdrawal in a higher percentage of people than prozac (fluoxetine). Everywhere you will read that this is due to the fact that the half life of prozac is longer than serotax's, and also due to the active metabolite of prozac (norfluoxetine). I think this is simply not true.

 

I have noticed reading a lot of threads in this website that the withdrawal sometimes has the onset months AFTER there is no ssri left in your body. Some people don't have withdrawal until 4/5 months after they stop the drug. For some reason (and this reason is not the longer half life), the withdrawal from prozac tends to have an onset later than the withdrawal from serotax.

 

Why prozac withdrawal comes later?, Certainly not due to the half life, because tappering serotax emulating the half life of prozac (tappering some weeks) doesn't solve anything for people withdrawing from serotax.

 

So again, there are so many things nobody know about this drugs, and more dangerous than ignorance is telling lies (that's what psychiatry is nowadays, a big lie)

[Lincoln78]

The propranolol can be cut in half so I think I will do that, I was hoping that it may calm the adrenaline surges but this has just not happened.

 

I agree with the lies thing Theon. I cannot remember how many times I have been given the " chemical imbalance" line or the " if you were diabetic would you worry about taking insulin? Your just like a diabetic but you need Prozac don't feel bad about it! " arrggg I believed it all, I feel kind of nieave but on the other hand why would I know. Personally I think general practitioners are woefully under qualified to be handing out these drugs.

 

I also agree the half life is not the reason withdrawal can take so long to emerge. I have read the antipsychotics can also cause a delayed withdrawal and that can sometimes be permanent.

[Altostrata]

I would reduce the propranolol gradually, by no more than a quarter of a tablet a week. If you've been taking it regularly, you can get rebound high blood pressure.

 

Withdrawal can seem to be delayed because your nervous system holds on for a while, then teeters and falls.

 

Cold turkey off Paxil is a very, very rough way to go off a psychiatric drug. Hang in there, it will take some time for you to recover.

[Lincoln78]

Im wondering if anyone else struggles with needing the toilet more at night? I average 4 visits a night, even with reduced fluids after 6. This is particularly frustrating  as occasionally i'm in what feels like a deeper sleep, only to be woken needing the toilet after only an hour or so of sleep. I have also had nystagmus for as long as i have been ill.

[Lincoln78]

Once last question. My GP is thinking I have endometriosis Iv had quite severe pain for at least 2 years but to be honest it seemed insignificant to all the other issues so I ignored it. She has booked me in for a laperoscopy, I'm very worried about the anaesthetic and being in hospital at all. I have enquired about having it under a epidural or local but I'm told this is not possible. I have tried to get on the contraceptive pill to relieve some pain but it effects my mood very quickly and gives me worse headaches.

[ChessieCat]

Hi Lincoln,

 

There is a topic here Urination and Bladder Issues which might be worth reading.

 

BTW welcome to SA.  It's a wonderfully supportive community.

 

CC

[Lincoln78]

Oh my days that's crazy! All this time I thought I was imagining bladder urgency. Thank you

[bubble]

On and off I've had rather disruptive bladder issues but never connected them with drugs. That is, until I came here and hear other people describing them.

 

Sometimes they are more intense and sometimes less or go away completely. I was never able to identify what causes them to flare up. But knowing they also improve I just put up with them. Unfortunately there are usually more pressing issues although getting up four times per night isn't fun..

[ChessieCat]

You're welcome.  I only read it a couple of days ago.

 

Oh my days that's crazy!

 

There's plenty about this whole drug thing that is crazy.  Ironically some of us thought we were going crazy before we went on them.  Thankfully the info and members of SA help us to stop thinking that we are going even more crazy.  CC

[Lincoln78]

My psychiatrist and I discussed a piece of work written my Dr Healey on protracted withdrawal. In it he suggest several strategies if withdrawal is particularly onerous. We discussed lamatrogene

Imipramine and another drug I forget it's name. My problem is really hyper alertness and getting almost no deep refreshing sleep, I know I have been off drugs over 18months and some things have improved but my sleep hyper alertness have not. Iv taken the decision to to try imipramine, my worry is my body with work against the sedation as it did the only one time I tried a sleeping pill, I fought it al night and ended up feeling worse very emotional the next day.

 

Has anyone tried imipramine in a very low dose. ?

[Altostrata]

See One theory of antidepressant withdrawal syndrome

[Lincoln78]

I have already read this. I think he suggested imipramine more as he has more experience with the drug than lamitcal. I know the tricyclics are less stimulating than ssris and he is suggesting a very low dose. 18 months is a long time to suffer, to add insult to injury I have a little bald patch developing which is nice and goes very well with my eye bags

[Altostrata]

Please contact Dr. Healy and get more information about his suggestions.

[Lincoln78]

Thanks

[nz11]

Lincoln may i ask why you feel you need to take yet another psychotropic drug.

 

As you are quoting Healy then you may have noted that Healy says healing can take 2-4 yrs once drug free.

Of course no one can say how long healing can take but you are still taking drugs right?.

 

Can i rec a book ...you may well get it from your local library ..its called 'Psychiatric drug withdrawal ' by Breggin.

 

It would be great if you could fill in your drug sig cos i am confused as to what you are or aren't taking.

 

I have the utmost respect and am in awe of Healy i think he is a genius. No disrespect to him but i do find some of his ideas on using these drugs well ...how can i say ..rather different.

 

 

Did you know that Healy refers people to this site.

[Lincoln78]

I will sort my sig

 

I'm not taking any drugs I haven't taken a pychiatric drug in 19 months.

[nz11]

I'm not taking any drugs I haven't taken a pychiatric drug in 19 months.

 

Well in that case have you considered the option of staying the course drug free. 5 more months and you cross the Healy healing start line.

Why compromise that at this stage of the game.

 

i dont want to belittle your insomnia. Many here are suffering from insomnia as an enduring issue,  for me i don't mind it as i know things hav been and could be sooo much worse. In time i am expecting my body to 'sort this'. I see it as just another phase of the healing journey.

 

Taking imipramine for this could possibly cause a paradoxical reaction.

 

What do you think?

[Lincoln78]

I do not ' want' to take drugs but I do want a chance at living.

 

2 years ago I was working 40 hrs as a legal secretary , I was a keen cyclist and runner. I was a mum and I was engaged.

 

I have lost my job, my partner recently moved out and while one child is grown up the other now lives with a relative most of the time.

 

I know many people on this site have and are suffering, I know many people have insomnia and all the other vile symptoms I have. I know many people have lost things very dear to them. I do not think I'm an exception.

 

You are very lucky you do not have insomnia. I don't often talk about the insomnia to people as i believe it reaffirms the problem in my head but I can say it is extremely difficult. Every week I go at least 1 night with no sleep at all and the others are between 2.5 and 4.5 but even that can be fractured. This has been going on for 16 months. The problem is, I am hyper alert at night. I have a sensation in my chest that is very unpleasant it stops me taking a full breath and I have to try and sleep sat up, tiny insignificant noises such as the fridge humming send waves of adrenaline flowing over my body. Having the endless adrenaline and cortisol running through my body is what I believe is causing the pain fatigue and depression. We are simply not programmed to be so alert for 19 months.

 

It's hard to put into words how much I do not want to take drugs, I'm not looking for a easy solution I have suffered waiting for improvement for many months, my diet is clean, I try to walk or do yoga everyday, I try to laugh at this whole thing.

 

What I think is that this level of insomnia is hard to comprehend if you have not experienced it. I produces a certain kind of hopelessness that puts the sufferer at a very high risk of suicide. I had read that lamictical had helped altrostrata who was in a similar position to regain some control of her sleep and calm her system and this prompted me to talk to my psychiatrist.

[Lincoln78]

I forgot to say thank you nz11 I also meant to write you are very lucky if you don't suffer insomnia as I know you do

[nz11]

 I also meant to write you are very lucky if you don't suffer insomnia as I know you do

Im not sure what you mean here.

 

Sorry to hear of your drug induced losses...sadly they are all too common. i can totally relate.

 

Insomnia sure sucks .... good luck whatever you decide.

[Lincoln78]

Thank you nz11

 

I spoke to my go today, she said she would not prescribe me any antidepressant tryclic or ssri after the reaction I have had. It is nice to hear in one way but in another it's tough knowing I have no fall back. There is a clinical trial in London for toms magnetic therapy and she has sent them a referral. She has also referred me to David Healy in Wales. I wish I had this GP 17 years ago maybe I would not be where I am now.

 

I only have my phone and cannot seem to add a signature does this need to be on a pic ?

[Lincoln78]

Tms therapy not toms

[nz11]

wow i wonder who has been talking to docs..sounds like word is getting around.

Great.

it's tough knowing I have no fall back

These are the famous words from a prior place...

'Freedom is in YOU'

You are your solution Healing comes from within. YOU are enough.

 

'May the force be with you.' !

[Lincoln78]

Maybe the force is with me as my appointment with dr healy has come through for February. I believe that although he is a brilliant champion for change and understands the potential harm they can cause he is probably as clueless as to how to treat protracted withdrawal as the rest of us and this is because no real research exists and any that would be done would be compromised by the pharma industry.

 

To say life is tricky at the moment is an understatement.. I did take my little one to panto though and although the noise was uncomfortable it was a insignificant compromise to see them happy.

[Petunia]

Congratulations on getting the appointment, even though he doesn't have any answers for protracted withdrawal, it will be nice to have the validation and support.

 

It would be great if you would put your drug and withdrawal history in your signature. Doing this helps people understand your context, it appears below each of your posts. Here are instructions for how to do it:

 

http://survivinganti...your-signature/

[Sarabera]

HI Lincoln,

I'm currently on a tricyclic (amitryptiline), which is also quite difficult to get off of (tried in past many times and failed). So obviously I wouldn't recommend a tricyclic, but you'll have to see what the doctor says. Sleep is very precious. One thing that you wrote stood out for me "ovulation lifts my mood slightly". What happens at ovulation is that your progesterone levels are increased quite a bit. A bio-identical progesterone has been extremely helpful for me, and may be what completely erased my depression. I'm currently not using it, for complicated reasons--partly because it does interact with the amitryptiline I am on. But you might try just a tiny bit of the OTC bio-identical progesterone cream, start with just a dab and wait a few days to see how you feel. Stay away from anything that is not bio-identical, as they can actually cause depression! I hope you can get some answers and healing very soon.

Sarah