Kooples: off antidepressants 6 years - still struggling

[Kooples]

Hello.

I stopped taking Ssri in 2013. I had taken them for 14 years and benefited greatly from them. I knew nothing really about them and stopped abruptly after reading some article in a magazine about their long term effects. 

I suffered greatly for 2 years trying several times to get on a different SSRIs( I didn’t know I should have tried the original)

i was completely non functional. 

Things have stayed fairly static since 2015. Still functioning at about 15% of pre 2013

constant tinnitus 

constant jaw and facial pain

constant headache

bouts of vertigo 

constant stiff neck from akathesia 

chronic fatigue 

chronic insomnia 

agitation/akathesia/rls 

severe depression 

doom

repetitive thoughts

 

lots more things.

 

my psychiatrist agreed I had akathesia but propranolol/clonidine has not really helped.

 

I am going to try liquid Prozac. I don’t know if this is the right thing as it caused akathesia when I took it 10 years ago but only for a few weeks then worked very well.

 

i do not want to take any meds but I don’t live a life I just exist. 

 

I was hoping  for a little support with this trial. 

 

 

[Sassenach]

Hi Kooples

Welcome to SA.

I am a junior mod and sorry to hear you have been suffering for so long.

I will need you fill in an intoduction and drug signature in due course.

However if you can answer the following questions in the meantime I can get things moving.

4 hours ago, Kooples said:

I suffered greatly for 2 years trying several times to get on a different SSRIs( I didn’t know I should have tried the original)

Did you see the same GP throughout this period?

 

4 hours ago, Kooples said:

my psychiatrist agreed I had akathesia but propranolol/clonidine has not really helped.

When did you see the psychiatrist and what was his full diagnosis?

 

4 hours ago, Kooples said:

propranolol/clonidine

Are you still taking both of these?

If so at what dose and time of day?

4 hours ago, Kooples said:

I am going to try liquid Prozac.

Who prescribed Prozac and what dose?

4 hours ago, Kooples said:

i do not want to take any meds but I don’t live a life I just exist. 

You have a really tough time and we will try to help.

Until we have time to review and confer it would be better if you do not start Prozac.

 

Sassenach

[Kooples]

Hi. Thank you 

 

I didn’t see the same gp over the first two years, but I do see the same one now. 

 

I saw several different psychiatrists getting diagnosis’s of severe anxiety and MDD. The psychiatrist I have seen for the last 2 years wrote to my gp saying I had suffered akathesia and to start any ad very very slowly. 

 

I still take propranolol 40mg a day. I don’t take clonidine anymore 

 

my gp prescribed Prozac in liquid with a starting dose of 2 mg. 

 

my nervous system has never calmed down. 6 years on I still have the awful feeling of being between sleep and panic. Any tiny little noise sends adrenaline surging through my body. I still cannot nap . I would not wish this on anyone 

 

thank you for your advice 

[Sassenach]

 

However there is more to it than that.

I would like to create a report for our senior mods to review your intentions but you would need to complete an introduction and drug signature.

At the very least it would be good to have a second opinion from those on here who specialise in A/Ds Benzos and withdrawal.

If you wish to go ahead this is the link you will need

https://www.survivingantidepressants.org/topic/18343-please-put-your-withdrawal-history-in-your-signature/

 

Sassenach

 

 

Edited July 26, 2019 by Sassenach
info no longer correct

[Kooples]

I don’t think she is a particularly good psychiatrist, she has wanted to put me on risperadone for anxiety for a long time. She doesn’t believe that I am still suffering from withdrawal. She will only I agree I had an extreme reaction to withdrawal.

 

I don’t feel like I have many other choices that trying the Prozac again. I know it’s risky but I cannot live the rest of my life like this, it really is no life at all 

[Sassenach]

@Altostrata @Shep @brassmonkey

 

 

Hi Kooples

 

https://www.survivingantidepressants.org/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

 

https://www.survivingantidepressants.org/topic/82-the-windows-and-waves-pattern-of-stabilization/

 

It is very important that you do not reinstate at too high a dose and that possible interractions with propranolol   are taken into account.

The mods are very busy but it is worth waiting to get it right, particularly in view of the time already elapsed.

 

Sassenach

 

[manymoretodays]

Hi Kooples and welcome,

And I am so sorry for your continued difficulties. 

On 7/25/2019 at 4:58 AM, Kooples said:

Things have stayed fairly static since 2015. Still functioning at about 15% of pre 2013

 

On 7/25/2019 at 4:58 AM, Kooples said:

my psychiatrist agreed I had akathesia but propranolol/clonidine has not really helped.

 

I am going to try liquid Prozac. I don’t know if this is the right thing as it caused akathesia when I took it 10 years ago but only for a few weeks then worked very well.

 

i do not want to take any meds but I don’t live a life I just exist. 

 

I was hoping  for a little support with this trial.  

 

How long have you been on the propranolol of 40 mg?

 

And here is a bit more about propranolol.  * it should also be tapered if you do decide to go off it.

Tips for tapering off propranolol

 

I usually use Drugs.com to begin to learn more about medications/drugs, and it's also great for checking drug interactions too.  Can you access that link and then plug in propranolol and Prozac, and copy and paste right here on your introduction page for us.

 

Do read through the link on reinstatement that Sassenach gave you too.  You may have already, so forgive me, if that is redundant.   I think that might help you to decide.

And which SSRI did you feel like you gained benefit from? 

You felt like Prozac caused the akathisia?  Was this while taking it?

How did you do on citalopram?

 

There's a ton of information, as well as members experiences here.  And you've always got choices Kooples.  Try not to feel guilty about past choices.  Most of us here, were pretty uninformed too.  So......you're among folks who understand. This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your tapering, give updates, and just keep a record of your journey.

And thank you for getting your signature done!

 

I'm going to just give you a few more links to some information here too, as I often do with newcomers.  In addition to those in the previous post.

*Why taper by 10% of my dosage?

Brain Remodelling

What is withdrawal syndrome.

 

Dr.Glenmullen’s withdrawal symptom list.

 

Love, peace, healing, and growth,

manymoretodays(mmt)

 

 

 

 

 

 

 

[Altostrata]

Hello, Kooples. I am sorry you are in this state.

 

Can explain more about how you feel akathisia?

 

Did you find diazepam helped? How about zopiclone?

 

On 7/25/2019 at 8:50 AM, Kooples said:

my nervous system has never calmed down. 6 years on I still have the awful feeling of being between sleep and panic. Any tiny little noise sends adrenaline surging through my body. I still cannot nap . I would not wish this on anyone 

 

Do you have this sensation of being between sleep and panic after you take propanolol? What time of day do you take it, how do you feel before and afterward?

[Kooples]

I feel akathesia as agitation, extreme neck and jaw stiffness and mental dread and doom.

 

propranonol helps when I have a tight chest and palpitations but apart from that I don’t really notice any changes after taking it. I take 20mg am and 20 pm. If I take 40 at once I feel quite dizzy or more dizzy than normal. 

 

I am extremely restless in bed. I cannot stay still. It takes me around 3 hrs to get to sleep, I then wake after a hour, then sleep fitfully but wake very early. I feel very agitated am. I also often wake in the night with deep feelings of depression and doom. It is extremely painful position to be in. 

 

I hate psych drugs but I would very much like to feel how I used to feel on Prozac. I had a sense of well-being and peace. 

 

My father has been my biggest supporter. He is unwell and I would do anything to be better to look after him and spend time with him. I fear my illness has caused his. 

[Kooples]

I haven’t taken Diazepam for years. It helped me sleep when I first started on Prozac and I liked how relaxed it made me feel. I would never go back to diazepam as I did so well getting off it. 

I take zoplicone maybe once or twice a month. I have gone months not take any so don’t think I am reliant but I am very very strict on no more than twice a month. It gives me a little sleep when I am truly desperate 

[Kooples]

I wanted to say that i also have intestinal cystitis. Iv had bladder problems since coming off the SSRIs. The standard treatment for this is amiltripyline which I am again tempted to try. 

IC would suck the life out of the happiest person. 

 

I am thinking of starting Prozac at 1mg is that too high? Thoughts welcomed 

[Sassenach]

Hi Kooples

 

Please see drug interreation report below.

 

Interactions between your drugs

Major

amitriptyline FLUoxetine

Applies to: amitriptyline, Prozac (fluoxetine)

Talk to your doctor before using amitriptyline and FLUoxetine. This combination may cause sedation, dry mouth, blurred vision, constipation, and urinary retention. You could also have high levels of FLUoxetine which include altered consciousness, confusion, poor muscle coordination, abdominal cramping, shivering, dilation of the pupils, sweating, high blood pressure, and increased heart beat. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using your medications without talking to your doctor first.

Switch to professional interaction data

Moderate

propranoloL amitriptyline

Applies to: propranolol, amitriptyline

PropranoloL and amitriptyline may have additive effects in lowering your blood pressure. You may experience headache, dizziness, lightheadedness, fainting, and/or changes in pulse or heart rate. These side effects are most likely to be seen at the beginning of treatment, following a dose increase, or when treatment is restarted after an interruption. Let your doctor know if you develop these symptoms and they do not go away after a few days or they become troublesome. Avoid driving or operating hazardous machinery until you know how the medications affect you, and use caution when getting up from a sitting or lying position. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

propranoloL FLUoxetine

Applies to: propranolol, Prozac (fluoxetine)

Using propranoloL together with FLUoxetine may increase the effects of propranoloL. Contact your doctor if you experience uneven heartbeats, shortness of breath, bluish-colored fingernails, dizziness, weakness, fainting, or seizure (convulsions). If your doctor does prescribe these medications together, you may need a dose adjustment or special test to safely use both medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

4 hours ago, Kooples said:

I wanted to say that i also have intestinal cystitis. Iv had bladder problems since coming off the SSRIs. The standard treatment for this is amiltripyline which I am again tempted to try. 

As you can see starting Amytriptiline would not be a good idea at present.

On 7/26/2019 at 7:40 PM, manymoretodays said:

How long have you been on the propranolol of 40 mg?

MMT asked this above.

Could you please amend your drug signature with this info.

4 hours ago, Kooples said:

The standard treatment for this is amiltripyline which I am again tempted to try. 

Again as you can see there are potential problems with adding in this drug.

I understand you have been suffering for a long time and want to do something proactive..

Unfortunately decisions made in haste invariably make things worse.

On 7/25/2019 at 11:58 AM, Kooples said:

I was hoping  for a little support with this trial.

We do not want this to be trial but a planned schedule to help you recover.

In order to do this it is essential that drugs are added or tapered in the correct order.

You have answered @Altostrata's questions above so I suggest we wait for her.

Please do not reinstate Prozac yet, it has been six years, a few days  to get it right is worth the wait.

 

Sassenach

 

[Altostrata]

I don't know if Prozac or amitryptyline might help, Kooples. Whatever you try, be careful about the dosage, a probe of maybe 1mg is enough to see how the drug affects you -- despite what a psychiatrist might recommend. They like to bring big sledgehammers down on symptoms, but the nervous system is a delicate thing.

 

It sounds to me like diazepam might be most effective for the symptoms you're describing now. I don't like to suggest it, but we have many people here taking benzos to assist recovery from antidepressant withdrawal syndrome. Again, a very low dose is best as a trial and may be sufficient for a sensitized nervous system.

 

Unfortunately, dependency is likely and tapering the benzo will be required later, but we have people doing that successfully, too.

 

Another option is low-dose lamotrigine, see

 

I am sorry these drugs incur these difficulties, about which doctors are widely ignorant.

[Kooples]

Thank you.

 

it was only a thought about amiltripyline I don’t intend to start both that and Prozac. 

 

Its just every problem I have amiltripyline is suggested. 

Constant headache

facial pain-

bladder issues- 

insomnia-

Stiff muscles-

vertigo 

 

however I am a woman or reasonable intelligence and I know it is more complicated that just taking amiltripyline.

 

i once tried mirtzapine quarter of a tablet and it kept me awake all night and the next. Day I was so depressed and agitated I didn’t want to be around anymore. That was 3 years ago and I have not tried a sedating ad since. 

 

It’s just the prozac I hope will stabilise me a little.

 

i know there is no easy answers and I know you guys don’t know if it will help but I honestly feel I don’t have much to loose.

 

ps waited 6 years so happy to wait for advice no rush

 

oh I have taken propranolol for around 18 months. I intend to cut down slowly to 20mg but it has controlled the constant palpitations. I did see an increase in depression but to be honest it could have been other life events and the stress of managing the terrible effects of long term suffering such as relationship losses and finances. Watching my lovely dad try everything to make me better then become quite low himself is very stressful. 

 

thank you 

[manymoretodays]

Hi Kooples,

 

On 7/26/2019 at 1:50 PM, Kooples said:

I feel akathesia as agitation, extreme neck and jaw stiffness and mental dread and doom.

 

propranonol helps when I have a tight chest and palpitations but apart from that I don’t really notice any changes after taking it. I take 20mg am and 20 pm. If I take 40 at once I feel quite dizzy or more dizzy than normal. 

 

I am extremely restless in bed. I cannot stay still. It takes me around 3 hrs to get to sleep, I then wake after a hour, then sleep fitfully but wake very early. I feel very agitated am. I also often wake in the night with deep feelings of depression and doom. It is extremely painful position to be in. 

 

I hate psych drugs but I would very much like to feel how I used to feel on Prozac. I had a sense of well-being and peace. 

 

My father has been my biggest supporter. He is unwell and I would do anything to be better to look after him and spend time with him. I fear my illness has caused his. 

 

And okay, I see your note on the propranolol dosing here.

And oh my, on your last statement here.   Of course your illness did not cause his.  I can so relate though, as I have an older Mum.  And this whole role reversal thing has been tough on me as well.  And oh.....my fear of "when she'll be gone from the earth".  Mum, a fine supporter for me.  Not that we see eye to eye on everything.......far from it.  But all those times, when she has pulled through in the past, and either just listened or actually traveled, to come on over and help with the more practical stuff.  And now......me.......  I mean me doing that for her.  Not without some challenges.

 

I am sorry too, for your challenges now, in relation to these drugs!

And more options for you to consider above.  Isn't Alto the best? 

 

Love, peace, healing, and growth,

mmt

 

 

[Altostrata]

57 minutes ago, Kooples said:

oh I have taken propranolol for around 18 months. I intend to cut down slowly to 20mg but it has controlled the constant palpitations.

 

If it controls these cardiac symptoms, I would not change it.

 

I would consider diazepam or lamotrigine, but at dosages far lower than most doctors consider ordinary.

[Kooples]

Thank you 

 

I cannot take diazapam I was reliant on it for several years and did a very slow taper in 2009. I had no symptoms coming off it but I don’t see how taking it would help me in the long run as much as I think it may help short term. Iv been like this 6 years with no improvements, I worry there have been permanent changes in my brain. 

 

i Would very much like to try lamotrgiene I have read about its benefits. It’s very difficult to get drs to prescribe off label in the uk. I have been told no several times. I’m going to go ahead with the Prozac trial starting 1mg.  If it can improve my sleep just a little I would smile all day. I have not slept through the night in 6 years. Last night I slept 11.30 till 2 then was awake till 6.45 then slept till 9. Life really isn’t worth anything on that sleep every night 

 

 

 

 

[PatriciaVP]

Hi Krooples -

 

I'm so sorry that you've suffered so much for so long. You're a amazingly strong person to hold on the way you have. It might not feel that way, but you are.

 

I hope the Prozac brings you some relief. Please know you are not alone. 

 

Peace, love and healing. 

[manymoretodays]

Hi Kooples,  I hope you can get some improvement in sleep duration.  And oh my......on being unable to find a Dr. to prescribe.  The information is in the link Alto gave you on Lamictal, as far as prescribing, and the low dose.  Any Dr. could prescribe it.  Sounds like you may have tried already though, without much luck.  Ugh. The bulk of of the Lamictal information is a few posts down in the link.     Also, in the Tapering section we have a list of Drs, clinics, etc that might have someone in the UK.  The list is one of the pinned topics at the top.  In the tapering forum.                                                                                      If you go with the Prozac,  do keep some notes.  And keep us updated.  Might be best to space it's timing from your propranolol.                                 Best. L, P, H, G,   mmt

Edited July 31, 2019 by manymoretodays
more on Lamictal and finding info., Drs, spacing

[Altostrata]

On 7/31/2019 at 3:58 AM, Kooples said:

Thank you 

 

I cannot take diazapam I was reliant on it for several years and did a very slow taper in 2009. I had no symptoms coming off it but I don’t see how taking it would help me in the long run as much as I think it may help short term. Iv been like this 6 years with no improvements, I worry there have been permanent changes in my brain. 

....

 

 

Not clear why you cannot take diazepam. Whatever you were told about being "an addictive personality" is not applicable.

 

A little diazepam might help you sleep. Taking another SSRI, such as Prozac, is less likely to help your symptoms.

[Sassenach]

Hi Kooples.

 

How are you doing?

 

Sassenach

[Kooples]

18 hours ago, Altostrata said:

Not clear why you cannot take diazepam. Whatever you were told about being "an addictive personality" is not applicable.

It says on my notes I was addicted to Diaz and drs  won’t prescribe it.  They will prescribe bits of zoplicone. 

 

My mood is very very low, Prozac worked very well for me and I slept very well on it. I can accept my brain has changed and that it may not accept it now but I genuinely feel scared of this low mood. It is impossible to describe. 

 

RLS is worse than every. I paced half the night last night. 

[Sassenach]

When did you last see GP?

[Kooples]

Hi sassenach

 

i haven’t been In a while but I have an appointment coming up. I find seeing the gp very stressful. 

 

 

[Sassenach]

We need to work on this.

It is their job to help you.

I have to go now but think about the course of action you would prefer and we will go from there.

We all need to make them understand without antagonising them.

Catch you tomorrow.

 

Sassenach

[Kooples]

Thank you 

[Altostrata]

How did you become dependent on diazepam? There's a big difference between being dependent and being "addicted."

 

A lot of people find fish oil and magnesium supplements helpful, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Try a little bit of one at a time to see how it affects you.

 

Magnesium tablets (citrate or glycinate), magnesium oil, or Epsom salts baths (magnesium sulfate) can relax "restless legs." It is also relaxing overall.

 

"Restless legs" often need daily stretching, as they can arise from too much sitting.

 

[Kooples]

3 hours ago, Altostrata said:

How did you become dependent on diazepam? There's a big difference between being dependent and being "addicted."

 

I started it when I began taking Prozac many years ago. Prozac made me very agitated so I was prescribed lorazepam then Diaz. I took it for many years as I liked how relaxed it make me feel. I shouldn’t have said addicted as I wasn’t addicted but I was dependent. 

 

My rls is definitely not from “too much sitting”  it started when I withdrew from Prozac and is related to the akathesia I had. 

 

I walk everyday and I do yoga. I weigh 9 stone and I’m 5 foot 8. I am not a sitter despite how unwell I am. 

 

I ran long distance  prior to Prozac withdrawal destroying my physical and mental health. I had a resting heart rate of 45-50 and my bp was 90/60. Of course I have lost that level of fitness now but I do not sit for long periods despite being diagnosed with cfs 

 

I’ve taken magnesium glycinate for years.

 

i see neurologist about rls next month. I have it so bad I would not wish it on anyone 

 

 

[Sassenach]

Hi Kooples

 

Had any thoughts on how you would like to proceed?

From the above you are doing all the right activities and obviously have determination.

For what it is worth I would take Alto's opinion over any doctor or psych for two reasons.

1. Doctors and psychs know nothing about withdrawal from these drugs.

https://www.rcpsych.ac.uk/news-and-features/latest-news/detail/2019/05/29/rcpsych-calls-on-nice-to-update-its-antidepressant-withdrawal-advice.

2. Alto has been through W/D and set up this site because nothing else was available. She has spent years learning and researching this one subject whereas doctors and psychs have to have a broad knowledge spectrum.

On 7/28/2019 at 8:02 PM, Altostrata said:

lamotrigine

I realise there is an issue with off book but if that is your preferred option we can try and use the system make it happen.

Why do you find GP visit stressful?

 

Sassenach

[Kooples]

Hi Kooples

 

i really respect altos opinion. I just have to ask more questions. I just don’t see how Diazapam will help long term anymore than the odd zoplicone. Plus I really like diazepam so I’m scared of it and also my dr won’t prescribe it so it’s difficult. 

 

I want to be positive and when I ask myself serious questions  and I answer them trufully I don’t want to die at all I love life  I just don’t want to live with these terrible symptoms anymore. 

 

i can ask again about lamotrgiene but gps don’t prescribe lamotrgiene. I have to ask the psychiatrist and when I do she sighs and says no. I have the option of all antidepressants even the old maois which doesn’t make sense. I suppose my rational brain remembers how healthy I felt on Prozac so thinks that may help but again I know things change, dr Healy explained that to me 5 years ago 

 

 

[Altostrata]

Have you tried acupuncture for the leg movement?

 

I don't know what else to suggest. I'm not in a position to recommend other drug treatments.

[ChessieCat]

You might find it helpful to write a script and rehearse what you are going to say so that you can get what you need.  Be calm, gentle but assertive.  You are the customer, it is your body.  Use words like I'd like to try this, or I'd prefer to do it this way.  If a suggestion is made that you don't want to follow, say I'd like to think about it before making a decision.

 

I suggest you check out this topic:

 

how-to-talk-to-a-doctor-about-tapering-and-withdrawal-what-to-expect

[Kooples]

I will try for lamotrgiene again. It’s makes me feel completely hopeless that nobody thinks Prozac is a ok idea as I was so lifted to think it may work. 

 

I know now your only being honest and it’s not a criticism. 

 

I feel beyond help 

[Sassenach]

Hey Kooples

 

You are not hopeless and this is not your fault.

Many people simply cannot find the motivation to exercise through the pain, you do.

Are you aware of your rights under the NHS?

They have a duty of care.

Are you a reasonably confident person?

 

Sassenach

[Sassenach]

Hi Kooples

 

How are you doing?

 

Sassenach

[Kooples]

I’m finished.

 

can you please delete my thread I can’t work out how to do it. Please it’s very important to me. 

 

Thank you so much