Terry4949: withdrawal help

[Terry4949]

10 hours ago, wantrelief said:

I am so sorry you have had a set back and find yourself back into full blown symptoms. It is good to hear that before the set back you had experienced some much deserved improvements. It is SO hard how unpredictable and slow this process is but I believe if your brain was able to move into that better place you will get there again.  You have been so brave and courageous to keep holding on.  I really hope you find yourself back in a better place very soon.

Thank you for your kind words my symptoms have never really gone away only lessened to a much more manageable level especially after 3 years off even my sleep had improved even though I’m still very tired most of the time but this has hit me really hard even the horrid deep dark depression has risen it’s head and that had eased so much I had forgot how bad it gets 

again thank you for reaching out and replying to me

[Terry4949]

16 hours ago, ChessieCat said:

Q:  Have you had Covid, Covid vaccination/booster, flu, flu vaccination or have been/are sick from anything else?

 

Q:  How many hours sleep are you getting?

I had covid at the beginning of last year but recovered pretty quickly one of the luckier ones the only sickness I have is long term sinusitis but take no meds or sprays for it 

my sleep has improved the first two years I was getting 2-3 hours a night now after more than 5 years off I get between 4-5 hours I have no trouble falling a sleep I go to bed at the same time every night no tv and the room is completely dark but I still can’t sleep past 2am if I then don’t get up I get cortisol spikes even after so long off the meds I know 4-5 hours isn’t much in terms of sleep but after taking mirtazapine it destroyed my sleep cycle from just 1 tablet 😔 

thank you for taking time to reply

[Altostrata]

@Terry4949 it must be so frustrating to have a setback after you've struggled for so long. As we've discussed many times before, this sometimes happens. Hang in there!

[Terry4949]

5 hours ago, Altostrata said:

@Terry4949 it must be so frustrating to have a setback after you've struggled for so long. As we've discussed many times before, this sometimes happens. Hang in there!

Thank you 

[RachelSusan]

@Terry4949 Hi Terry.  I have been aware of you for a long time as we both joined the same year. I came to this site in 2016 and I recall reading your posts back then.

 

Terry, I am so sorry you are going through this now. During my time in withdrawal and then the many times I thought I stabilized, I came to realize how unpredictable our situation can be. We can be feeling pretty good one minute and then the symptoms come back.  I hope you stabilize quickly. This must be beyond frustrating for you.  Again, I am very sorry you are going through this.

[Terry4949]

4 hours ago, RachelSusan said:

@Terry4949 Hi Terry.  I have been aware of you for a long time as we both joined the same year. I came to this site in 2016 and I recall reading your posts back then.

 

Terry, I am so sorry you are going through this now. During my time in withdrawal and then the many times I thought I stabilized, I came to realize how unpredictable our situation can be. We can be feeling pretty good one minute and then the symptoms come back.  I hope you stabilize quickly. This must be beyond frustrating for you.  Again, I am very sorry you are going through this.

Thank you for your kind words it is a awful set back to be honest the dark cloud has descended once more with all the brutal symptoms I hope you are doing better with your withdrawal I see by your signature that you are now med free congratulations I hope things will continue to improve for you 

[RachelSusan]

@Terry4949 Yes Terry, things are much better for me now.  Thank you for your comment. 

 

 

[Terry4949]

I know this has probaly been asked many times but can about of depression hit you 5 years and 6 months out of all meds is this still a wave I have been doing ok mood wise but the last 7 days I have crashed to a crushing level of depression I can hardly sleep eat or talk or walk just feel so lost and sad it’s hard for me to get my head round this is a wave as this is as bad as gets I’m struggling to come to terms with how I feel it’s that bad I havnt seen many people so far out who have struggled so bad most have made improvements after at least 3 years I’m struggling to keep my head above water here I’m sorry for all the negativity but I’m to scared to try to take anything to help I’m eating well and drinking plenty of water no alcohol I’m afraid of going to a doctor as they will only want tompush meds on me but I feel I need to talk to someone as this is coming very hard to cope with any suggestions 

[Ariel]

Hi @Terry4949

I'm so sorry you're suffering. 

 

1 hour ago, Terry4949 said:

the last 7 days I have crashed to a crushing level of depression I can hardly sleep eat or talk or walk just feel so lost and sad it’s hard for me to get my head round this is a wave as this is as bad as gets

 

I don't know what it's like to be you, but based on your description this sounds like a wave. 

I'm sorry you're getting slammed with these symptoms. I know how disheartening it can feel, especially when we're so many years off drugs. 

 

It helps me to read this essay, What is happening in your brain?

Reminds me how amazing our bodies are, how they're working so hard to heal, and how vast and mysterious the healing process is. 

Healing is happening all the time, even when we don't consciously feel it. 

 

Hang in there, Terry. This is temporary, it will pass.

It gets better <3

[Terry4949]

49 minutes ago, Ariel said:

Hi @Terry4949

I'm so sorry you're suffering. 

 

 

I don't know what it's like to be you, but based on your description this sounds like a wave. 

I'm sorry you're getting slammed with these symptoms. I know how disheartening it can feel, especially when we're so many years off drugs. 

 

It helps me to read this essay, What is happening in your brain?

Reminds me how amazing our bodies are, how they're working so hard to heal, and how vast and mysterious the healing process is. 

Healing is happening all the time, even when we don't consciously feel it. 

 

Hang in there, Terry. This is temporary, it will pass.

It gets better ❤️

Thank you for your reply I am beyond despair that I have gone so far back in such a short time I think that living of such little sleep over the last 5 years has payed a heavy toll I have been consumed by so much fatigue over the last week a darkness has descended so deep it is truly terrifying to think that this is a wave so intense so far off I can barely function a week ago I was able to at least go for a walk do jobs round the house gardening socialise more or less live a half normal life but now I’m holed up at home thinking when does this ever end 

[Ariel]

@Terry4949

You can do this, Terry! 

The wave is temporary, it will pass. 

Healing is happening. 

Sending you a hug <3

 

[Terry4949]

I truly am lost for words 5 years and 6 months after completely stopping all meds I am truly back in full withdrawal and I just can’t understand why it is so bad every symptom is back full force symptoms that I had forgotten what they have felt like have returned it’s like I just quit the drugs yesterday again my main symptoms are 

2 am waking with severe cortisol spikes sweating and overheating { which had gone } but still sleep was poor only 3-4 hours a night 

brain fog and depression has returned big time { which over the years had become mild and manageable}
dp/dr and severe blurred vision 

unbelievable fatigue never felt this intense ever 

severe aching legs 

inner restlessness the feeling of unease { but not akathisia like I had in the early day }

sever burning feet hands a lips 

headaches 

real lack of motivation and interest just feel so tired all the time 

extreme over heating and sweating doing the most simple things 

I am eating very healthy mainly fruit bananas and blueberries nuts chicken fish and the odd potato I have zero sugar avoid dairy no Alcohol and don’t smoke I try to exercise everyday by walking 

I practise positive thinking and try to push myself as much as possible I have learnt acceptance over the last few years as I can’t change what has happened 

the sun is shining here today in the uk and I’m literally house bound as I can’t seem to tolerate the sun when I’m in the throws like this 

the last 3 days I have still managed to get out for my walk it’s about 3 miles even though I feel so bad and it really takes it’s toll on me so I am trying to keep motivated 

my appetite is very poor but trying to eat little and often but drinking plenty of water 

I know this site has a abundance of knowledge and help on here and believe you me over the last 5 years I have read nearly every page and thing suggestion wise the only problem for me is that I am very sensitive to supplements I have purchased so many over the years and have bags full of them just can’t tolerate them 

I have though just ordered some seriphos to see if that would help my sleep and tone down the cortisol spikes in the morning but I will start on a small dose to test the water and being of all meds for well over 5 plus years I might not be so bad even though I am anxious to make anything worse 

im so sorry for the long rant I just need to vent I think as no doctor believes my symptoms so it’s a waste of time trying to tell them it’s the usual you have anxiety nonsense the one thing I don’t have funny enough
im just so disheartened to have gone back to full intense feeling and symptoms I had just started to get some sort of life back since I was kindled from mirtazapine but now I feel like I’m going through all again 

thanks for listening any thoughts would be appreciated 

[Ariel]

@Terry4949

You are very welcome to vent all you want if it helps you! 

 

I'm sorry things are so hard right now. 

You know what to do to get through and you're doing it. 

 

Have you also eliminated caffeine? Coffee, tea, chocolate. 

 

You are wise to avoid supplements. I've found I can only tolerate powdered magnesium. 

Like you I purchased many supplements over the years and found I couldn't tolerate them. I ended up donating a big bag full to my local health food shop. The owner promised to distribute them among their more financially struggling clients. 

 

Remember this is temporary. This wave will pass, just as every wave before has passed. 

Hang in there, Terry. You can do this!

Moment by moment, hour by hour, day by day, step by step. 

It gets better. Healing is happening all the time, even when we don't consciously feel it. 

 

Come back and write and rant as much as you need. We're here for you. 

Sending you a big hug <3

[RachelSusan]

@Terry4949 Hi Terry,  I am sorry to read about your suffering. It must be shocking to have these symptoms return after all this time.  I hope your stabilization comes quickly. I am very glad to read that you continue to walk and maintain a healthy lifestyle. I believe this will help in your healing process.

[Longroadhome]

It sounds like a wave even though you say it’s much worse than other waves you’ve had. Awful as it is this can happen as you know. 
Hold tight it will pass. 

[Terry4949]

Really struggling again today my mood is so low and I’m getting suicidal thoughts again I spent two years having these every day then they disappeared now they are back with this crushing feeling of emptiness I feel so emotionally drained I can’t believe this is happening again I fear for telling anyone as here in the uk they lock you up and force meds on you as if you are a criminal I feel like i am letting everyone down again my sleep is so bad which isn’t helping only had about 6 hours in the last 5 days my mood will lift every now and then and I feel brighter then 30 minutes later I feel so emotionally low and suicidal  my family have listened to me for the last 6 years and are fed up with it they have there own lives to live I know but they think I don’t want to help myself 

I have explained to them so many times what has happened to me but even they don’t believe that after so long I can be suffering waves as bad as this even though I have shown them this group plus various articles backing it up 

my friends all left me years ago my two wonderful children are away 1 of them in the army who I hardly ever see even though I’m so proud 

my wife tells me I need to go back on some sort of medication she doesn’t understand the damage from being kindled I have had and what will happen if they put me back on medication I am truly lost 

I think this has to be the worst wave ever truly even when I was c/t of so many meds I new what was happening and I no now but from going 5 years and improvements to this is destroying 

[Altostrata]

If you truly are suicidal, our responsibility is to urge you to contact someone near you for face-to-face assistance. We have no way to assist with emergencies here.

[RachelSusan]

@Terry4949Hi Terry,

I am deeply sorry you are in pain. This has to be soul destroying.  It is true that most of our families have a difficult time hearing about our withdrawal issues. They feel helpless, frustrated, and tired. Very much like we feel. I really wish you had someone to talk to besides your family. If you want to vent and they are not up to listening continue to come here, we will listen. I wish there were online zoom support groups for what we have going on with withdrawal but I haven't been able to find any. Yes I did a google search for you just to see if I could come up with anything, but sadly did not find anything. We are so lucky to have this site. 

 

If you are suicidal please please please do seek help. This is nothing to take a risk with. Do you have psychologists that do no prescribe medication in the UK medical system? Perhaps this would be someone to start with if you don't feel you want to deal with someone that has that prescription pad all ready to go. But please do reach out to the medical professionals if you feel you are at risk.

 

Terry, you have stabilized once before, I believe your body will do it again for you. Hang in there.

[Terry4949]

Thank you your reply this is so upsetting truly for me I know I have been here before but when you feel right back like you did right back at the beginning it so painful every physical symptom under the sun is back plus all the mental ones the fear the dread the deep sadness and lack of desire to do anything when I thought I had crawled out of the pits of hell after 5 years and 6 months to be plunged back into this state scares me so much 

my sleep has become non existent again and very toxic feeling with what little I get which is awful the mornings are evil then I get severe bouts of the suicidal depressions that cause that utter panic I know it’s down to high cortisol during the night as I toss and turn from 2 am in bed until it gets so unbearable then I have to get up 

I don’t even get any relief in the evenings it’s constant like I have been kindled all over again 

here in the uk it’s virtually impossible to get to see a physician or a doctor now after covid waiting times are like 2 years if I phone my doctor all they suggest are meds 

im trying to keep going even trying to make out to my family that I’m ok so as not to worry them so that they can enjoy there lives as I know how they have suffered as well yet I feel so bad inside 

thanks for listening 

[RachelSusan]

@Terry4949 Terry, it's just terrible. I know you are suffering.  Can you say to yourself, I did stabilize before I will do it again? 

 

Are there any support groups in the UK?  I couldn't find any for withdrawal but there are sometimes support groups for chronic pain.  Would you ever consider anything like this?  I only ask because sometimes it helps to talk about pain. It doesn't solve the problem but sometimes it helps for even a short moment.

 

 

[Terry4949]

22 minutes ago, RachelSusan said:

@Terry4949 Terry, it's just terrible. I know you are suffering.  Can you say to yourself, I did stabilize before I will do it again? 

 

Are there any support groups in the UK?  I couldn't find any for withdrawal but there are sometimes support groups for chronic pain.  Would you ever consider anything like this?  I only ask because sometimes it helps to talk about pain. It doesn't solve the problem but sometimes it helps for even a short moment.

 

 

Thank you for your reply there are support groups in the uk but most don’t recognise damage from withdrawal and none of them understand kindling 

I have spoken to a few here if your lucky to find one but most of them advocate drugs 

the physical pain and symptoms I can live with even though the suffering is bad at the moment  it’s the overwhelming feeling of hopelessness and apathy that is killing me 

today I have most of my wonderful family hear all laughing and joking and having a good time as the weather is beautiful and I am like a shadow of a person I want to cry as I feel so lost and alone the feeling of nothing is worse than all the physical symptoms put together my brain fog is relentless 

I just pray this is a bad wave as the thought of this not lifting or going on for months is agonising I have seen so many people on this site that have gone through the windows and waves for long periods and after a many have gone on to recover but not that many I have seen have gone back to acute symptoms so far after 5 years out I know there are a few but this scares me as to how much damage is being done even more to my brain 

I know you can’t do anything to help me only I can do that but thank you so much for reaching out to me , only those that have suffered withdrawal truly know how bad it is , 

[Terry4949]

Who would have thought that a month ago I would have been in this mess that was my first thought this morning after waking from a horrible cortisol few hours sleep from going from semi functioning with very mild depression to this awful state of crushing depression hopelessness and physical symptoms and the dreaded fatigue 

I lay in bed and thought about how I had got here and how much of my life I have spent on meds suffering from meds and withdrawal and it is frightening 

I spent the last 30 years on mind altering drugs the very first one gave me suicidal thoughts that ended up with me being put in a mental ward and was forced to stay on it as I wasn’t giving enough time so I was told only to find out many years later the drug had a warning on it for teenagers that it could cause such thoughts 

I then thought about how many different meds I changed to over the years being swap with no taper until one of them gave me horrendous withdrawal symptoms that lasted for months ( but I only know that now ) just thought it was intense anxiety which intern led me to venalaxafine which in all honesty over a period of a few weeks change me for the good my symptoms went away and the depression eased so I stayed on them for over 10 years plus until I hit tolerance then the **** started 

the doctors then put me on so many different drugs over a period of 18 months to no avail I was hospitalised again and told them they were killing me so they stopped everything so 35 years of drugging just came to a end 

I hit tolerance about 1 year before I came off the vex so here I am almost 8 years into withdrawal just over 5 years off all meds over 35 years off drugs and trying to fight for my survival 

im now 55 years old so have spent 37 years being damaged by the drugs the first 18 years of my life were great the rest has been a war a life of suffering because a doctor told me I had a chemical Inbalance I only went to see him because I had FOOD POISONING Yes that’s right from being on holiday 

I don’t know if I ever will recover at the moment it doesn’t feel like it never had depression before meds but now have a depression so deep  the lost of all motivation and interest tears me apart and the years of physical suffering going on 8 years now 

I lay in bed and thought to myself how did someone get to do this to me what have I ever done to deserve this and no one will ever be accountable it truly breaks my heart and not to mention my poor family who have had to watch me suffer and they have suffered to 

the one true thing I can say that for me to anyone who reads this please do not cold turkey please taper your meds I had it taken away from me and over 5 years off I’m so damaged I know it takes a lot longer for people to heal this way I just hope if I can ride out this horrendous wave that hopefully I will see a window and I will certainly let you know 

sorry for the rant I am on my own at the moment and really struggling to deal with this so severe all over again 

 

[Roserdl]

Hello Terry

 

I'm sending you light and positive wishes.  I'm in early phase so I know how painful it is and it is really difficult to explain to people what this condition is...hugs

[Longroadhome]

Keep going Terry. No matter what just hang in there. 
Recovery is not linear as you know. 
This is a nasty wave but it will pass. 

[wantrelief]

Yes Terry, as Longroadhome said keep hanging in there. I've read or heard that the strongest waves can sometimes bring the most healing.....that is my greatest hope for you. We are all rooting for you here.

 

 

[RachelSusan]

@Terry4949 I read your story about being medicated so early in your life .  That stinks.  Hang in there Terry. You will stabilize.

[Healingcontinues]

Hi @Terry4949

 

I am so so sorry to read that you are struggling so much after all this time. I think it is incredible how long you have endured what you have. It really does show how hard you want to fight this and your resilience. I know you feel like you are a burden to your family, but honestly they have a huge role model in their lives having someone with the strength and determination that you have shown in the last 5+ years.

 

I read that you had been looking at maybe finding a psychiatrist. As you are in the UK I was wondering if maybe booking a consultation with Baylissa may help? She has been through withdrawal herself and offers coaching and counselling to others. She recently updated her website and appears to have more knowledgeable people on her team now too. You can book sessions with Baylissa via the consultation section on her website:

https://mccare.org
 

Another resource you could look into is the Bristol Tranquillizer Project. I know that the have a helpline you can call for support:

https://www.btpinfo.org.uk
 

Withdrawal is a very lonely path, but it does not have to be traveled alone. Reach out to us on here when you need to.

 

Warm wishes.

 

[Terry4949]

So I just had my latest blood test results come in the doctor said I had high cholesterol not mega high but over the limit for what they recommend so he advised me to cut down on the chocolate crisps fatty fried food and alcohol to which I replied I don’t eat or drink any of them I eat very healthy I’m 55 and have never smoked a cigarette 

then he said for the last 3 years my ferritin is above range but he isn’t concerned about it which basically is I have to much iron 

then he said my thyroid for the last 3 years is on the border line high and he wouldn’t want it to go any higher but in the last 3 years I havnt been informed of this 

I live in the uk and the institution for thyroid disorders and treatment give a reading for a man to be low 2.5 and high 4.0 mine has been 4.9 for the last 3 years doctors in the uk go by high being 5.0 even though the institution for thyroid say that’s to high 

then my doctor said to me that my iron levels in my blood are on the low side so how can I have high ferritin and low iron 

he then said that it’s nothing to worry about maybe not for him but it’s me that maybe suffering 

for those that don’t live in the uk it’s very hard in fact nearly impossible to get any help for treatment unless you go private and can afford to pay lots of money 

so do I need to follow up on this high ferritin and thyroid do you think this is what maybe making feel worse even though this is the worst wave I have ever endured since coming of all meds 5 years ago or am I just looking for a reason 

hope someone can help 

 

[ChessieCat]

Terry, SA is a site for getting off psychiatric drugs and doesn't provide general medical advice.  You might do some research online possibly find other supports sites about these things.  If possible I think it would be a good idea to get a second opinion.

[Terry4949]

Another awful night of insomnia with so many cortisol spikes every time I tried to close my eyes I went to bed at 10 pm dark cool room no light tv electrical stuff then spent 6 hours laying in the dark feeling sicker and sicker with the constant flood of cortisol until I had to get up as my skin was burning and I felt so shaky forced my self to go for a walk in which I nearly passed out as I felt so unwell with the amount of cortisol floating around this is the 7th day now on the trot and each night it seems to be getting worse not settling down I’m so tired 

[arbor]

Thinking of you @Terry4949.  I hate that laying awake wondering if sleep will ever come.  Please know you're not alone.

Arbor

[Terry4949]

Another night of very restless broken sleep I feel like I have been chemically destroy it surges through my veins so very depressed yesterday and the feeling of inner akathisia is getting worse again I feel like I did 8 years ago when the ven pooped out so soul destroying so sick again 5 years and 3 months of all meds havnt taken anything in pill form in all that time and back at square one no let up 

[Terry4949]

So I have had to contact my doctor about how bad I am sleeping and the fact I keep waking with severe jolts all through the night with like a chemical acid running through my veins it feels like I am being poisoned I havnt taken any meds in over 5 years he suggested that I may try promethazine he says it’s a antihistamine am I right in thinking that antihistamines are not good for us I think if I could get some sleep less toxic it may help me it’s different to cortisol spikes it literally feels like I have been injected with acid it’s like I can taste it so desperate even for 2 hours of sleep at the moment 

[ChessieCat]

Q:  Have you tried non drug techniques?

 

Q:  Do you taking any supplements?  For example B vitamins can be activating and Vitamin D is a daytime vitamin which is best taken in the morning, however some members find that even taking it is the morning might affect their sleep.  If you consume drinks containing caffeine then you might stop them.  Some member even has issues with decaffeinated coffee.

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

White noise devices for sleep

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

early-morning-waking-managing-the-morning-cortisol-spike

[Onmyway]

Hi @Terry4949, 

I'd try melatonin before trying promethazine for sleep. Your doctor will have to prescribe it. It helps with falling asleep.

 

High thyroid can make you feel jittery and hurt your sleep but it is not easy to treat - the medicines have side effects. Which of the thyroid hormones do you have in excess? TSH or T4? If TSH is high then the other one, T4, is generally low and vice versa. Sometimes TSH is high and T4 is normal which they don't treat. Why does he think you have high thyroid hormone levels? The treatment will depend on the underlying cause. One thing to help the symptoms are beta blockers but they can make some people depressed. Have you tried magnesium to help calm you? People report weighted blankets and background white noise help with sleep as well. 

 

I am so sorry you are suffering. Hope you start feeling better very soon. 

Have you done anything differently recently - any alcohol, other psychoactive substances etc? I suspect it is just a temporary setback that will get better soon. 

OMW

Edited July 15, 2022 by Onmyway

[Terry4949]

20 minutes ago, Onmyway said:

Hi @Terry4949, 

I'd try melatonin before trying promethazine for sleep. Your doctor will have to prescribe it. It helps with falling asleep.

 

High thyroid can make you feel jittery and hurt your sleep but it is not easy to treat - the medicines have side effects. Which of the thyroid hormones do you have in excess? TSH or T4? If TSH is high then the other one, T4, is generally low and vice versa. Sometimes TSH is high and T4 is normal which they don't treat. Why does he think you have high thyroid hormone levels? The treatment will depend on the underlying cause. One thing to help the symptoms are beta blockers but they can make some people depressed. Have you tried magnesium to help calm you? People report weighted blankets and background white noise help with sleep as well. 

 

I am so sorry you are suffering. Hope you start feeling better very soon. 

Have you done anything differently recently - any alcohol, other psychoactive substances etc? I suspect it is just a temporary setback that will get better soon. 

OMW

Thank you your reply all I know is my thyroid count is at the high end of the scale my doctor won’t do anything else here in the uk it’s hard to get any sort of else unless you go private which costs lots of money my blood level after my test said 4.9 and the limit is 4.0 I havnt had any alcohol or taken any drugs in over 5 years unfortunately supplements even magnesium are to activating but every morning when I wake I feel like my skin is on fire and acid running through my views i wondering about cutting out all histamine foods to see if that helps 

my sleep just stopped about two weeks ago and then my cns just went wild I have fallen into a deep depression which is hard to lift my head up from 

I had been working going out started fishing again which I enjoyed a bit of socialising over the last year and things seemed like they were improving but still had many symptoms now I’m back to my full withdrawal symptoms 5 years after stopping all meds