Terry4949: withdrawal help

[powerback]

On 8/7/2018 at 3:41 PM, Terry4949 said:

Is it possible to hit such a bad time 18 months out my physical symptoms have gone through the roof the worst ever I’m now 18 months of all meds but I have been feeling like this for 5 years , the skin on me burns I feel intoxicated but I don’t drink I have severe brain fog and cloudy vision over the last 3 months I have become so weak and a fatigue has hit me that I never felt before I feel like I have drunk acid , my deep dark depression has eased and is not so intense but I feel like I am wired to a electric current, I take no medications and can’t take any supplements but this is the strongest I have ever felt these symptoms and there is no break it’s constant 24 hours a day I need some relief before I go mad I truly can’t function at the moment 

Oh terry I hear you ,im the same ,only geting worse with a chest infection also at the moment.

Your system is obviously more sensitive and not the same after the shock it got.

You need to research and practice food intolerances ,smoking or drinking.

Eating good food/ nutrients is not about snobbery ,its about eating food with the least amount of crap and aditives .

Sugar ,dairy,gluten all tax the bodys system and our system especially.

Eat food in its wholest form.

I have fresh food in the press at all times so if I get feeling for takeaway pizza ,I dont because ive bought food that will perish.

Im well aware you mite be thinking its more than food but the cleaner our lifestyle the better chance we have .

Because you cant see insinde the body you wont see the inflammatory reactions of what ever goes into it .

To give an example : a rash I had for years on my kneck at my hairline is gone when I changed the shampoo I use .I use as natural product as possible.

I only wash with natural soap also .

Take and I pray we all find a solution quick .

[Altostrata]

Terry, we've told you everything we can tell you. I'm in California, I've done all I can for you. Please re-read this topic and see if there's anything else you can do for yourself.

[Rosetta]

You are going to be ok, Terry.  I just know this in some strange, unexplainable way.   When this WD feels that it is getting worse -- that is when further improvement is close.  I was desperate just weeks ago.  I was thinking about lamotrigine.  I didn't know if I could take another wave ever again and then that horrible time passed, and I saw improvement.  I was able to hold the feeling of a window -- the hope -- during the next wave for the very first time.  For some people 18 months is that turning point.  

 

It's possible that you are just approaching the "ridge line" and you are going to be able to look over the next valley any day now.  Battle fatigue is the problem.  I understand that now.  It's not just the symptoms alone.  Eighteen months is an awfully long time to be suffering, Terry.  You must be so very tired.  It's easy to lose hope when fatigue is intense in addition to all the other symptoms.  

 

Just try to think of in terms of one more day not a week, not a month, not a wave, not a window -- one more day, one more baby step, one more hour even.  You are amazingly strong to have survived this long, Terry.  It's not something every one could do, but you did.  You are amazing!!  I'm not sure you realize that, but you are.  You are stronger than me.  Sometimes when I feel despair I think of you, and I check to see if you have logged on recently.  Then, I think: Terry's still here.  You have been on and off meds through years of further irritation to your system than I can even imagine!  I think: If Terry can do this, I can do this.  

 

I want to see you get well!  I really do!

 

All my love, R

[Terry4949]

3 hours ago, Rosetta said:

You are going to be ok, Terry.  I just know this in some strange, unexplainable way.   When this WD feels that it is getting worse -- that is when further improvement is close.  I was desperate just weeks ago.  I was thinking about lamotrigine.  I didn't know if I could take another wave ever again and then that horrible time passed, and I saw improvement.  I was able to hold the feeling of a window -- the hope -- during the next wave for the very first time.  For some people 18 months is that turning point.  

 

It's possible that you are just approaching the "ridge line" and you are going to be able to look over the next valley any day now.  Battle fatigue is the problem.  I understand that now.  It's not just the symptoms alone.  Eighteen months is an awfully long time to be suffering, Terry.  You must be so very tired.  It's easy to lose hope when fatigue is intense in addition to all the other symptoms.  

 

Just try to think of in terms of one more day not a week, not a month, not a wave, not a window -- one more day, one more baby step, one more hour even.  You are amazingly strong to have survived this long, Terry.  It's not something every one could do, but you did.  You are amazing!!  I'm not sure you realize that, but you are.  You are stronger than me.  Sometimes when I feel despair I think of you, and I check to see if you have logged on recently.  Then, I think: Terry's still here.  You have been on and off meds through years of further irritation to your system than I can even imagine!  I think: If Terry can do this, I can do this.  

 

I want to see you get well!  I really do!

 

All my love, R

Rosetta thank you for your kind and heart warming words when you have suffered this long it’s very hard to think it will ever end I am pleased that I inspire you to keep going knowing that my suffering is helping someone to also fight through this gives me strength this 18 month spell has been dreadful and I think that I forget that maybe next week I could be better or tomorrow but the way my mind works is different I think how am I going to get through the next 18 months living like this it’s as if my mind has told me there is no healing as it has been so long now without the feeling of relief the mornings are so brutal day after day it is hard to find hope.  But I know I am not alone I read the recovery stories often to keep me going sometimes I find it hard as to see people recover makes me feel like I’m doing things wrong maybe because I was c/t of so many meds that’s why my recovery is taking that much longer I wish I had the opportunity to slow taper but the doctors took that away from me . I hope my window is just round the corner I have read of others who have had a 18 months of hell and found relief about the 24 months out so that’s what I need to aim at I know I will probably never get back to the old me after 30 years of being drugged but just to feel 50% better would be nice . I wish you well in your recovery and from the bottom of my heart I thank you for your lovely words and reply

 

[Rosetta]

You are welcome.  I think you will be surprised when you heal completely.  There's really no reason that you can't.  I can see that now.  Someday you will see it, too.

[Hibari]

Hi Terry,

I too believe that we can all  heal from this and that means you too.  I have read so many stories of recovery across the internet where people go through hell and then recover. 

 

I too am waking up with cortisol spikes, sweating and anxiety in the morning, it has become my regular routine.   From what I have read, this is a very common symptom and may be the last to leave but it eventual does. 

 

I know you are sensitive to supplements but lately I have been drinking some cups a chamomile tea and I do find it gentle and soothing.  It has helped me sleep at night or at least helped me relax enough to eventually fall asleep.  It's not a miracle cure but it has helped me with anxiety.   I drink it in the evening and sometimes in the afternoon.  

 

I also want to share that I have found it very difficult to attempt meditation at this time.  Though others find it helpful, and I have in the past, my mind is too wired at this time to do it.  In fact, it has made me feel worse.  I know I'm not the only one to experience this feeling.  I finally took the pressure off myself to keep trying and it felt like a relief.  There will be time for it in the future when I can tolerate it.

 

You will make it Terry and I completely understand the level of fear and anxiety you go through.   At those times, it's hard to believe that healing can happen but I can.

 

 

[Terry4949]

I know I am in protracted withdrawel but I’m now 19 months of and my body just feels like I have acid in my veins and I can sense such a chemical inbalance at 19 months of I feel this symptom is worse than ever the thing is I have done so much more to try and help myself I have not eaten sugar for 15 years cut out wheat most gluten I have been following a histamine diet I get out and walk for excersise I try many relaxation techniques I try to use distraction as much as I can in fact my anxiety is probably at its lowest since I can remember but I have just hit another massive wave of depression but the constant poison feeling is crippling acid for blood and all my nerve endings seem on fire is this still withdrawel or is this neurotoxity where my body and brain has destroyed all connections to healing am I going about this the wrong way the only offer I can get for help seems to be a benzo and we know how damaging they can be I dont want to resort to that route but I’m at a lose to ease these symptoms as they are so unbearable I have been out the house today trying to do as much as possible so as to distract myself but the feeling is so overwhelming , unfortunately I am so sensitive to fish oil makes the symptoms so much worse and magnesium makes me more depressed even though the magnesium does seem to dampen the feeling down a bit , can anyone shed any light 

[Terry4949]

I have noticed a pattern to my symptoms just when I can barely function which is a good thing I go to bed and wake from a few hours sleep and I wake with such a burning brain this the brings back all my withdrawel symptoms which are 10 fold then it takes months for all my symptoms to drop down to a bare liveable level again and just when I think I maybe making some progress it happens all over again I am at a loss I now have them terrible chemical induced headaches again that last all day I havnt found any pain relief that eases it , I know about the windows and waves but what makes my brain burn surely at 19 months this should be easing anyone got any idea

[Altostrata]

Terry, you continue to ask the same question over and over. Please re-read your Introductions topic before posting again. Thank you.

[jozeff]

I'm so sorry for you Terry. I can see you feel hopeless. I want to wish you all the strength needed for your battle. I know you are looking for a solution. I posted many things hoping for the golden hint. Someone might just write something that opens your eyes and truly helps. 

 

Until that happens I hope you take it day by day and that each day you feel a bit positive for some time. You said that you have some reasonably good months and then hit hard again. Is this a pattern. I wonder how that is possible. I heard someone talking about a six month receptor regrow period.

 

Anyway I hope you get better soon and I wish you all the best from the Netherlands

 

Jozeff

[jonnypeters1234567]

Sorry to hear your still suffering Terry

[Terry4949]

I hope I have posted this in the right forum , I am now 21 months off from a c/t from several meds in a short space of time my history will explain I have hit the most unimaginable depression I have ever felt I cannot get of the sofa I can’t eat to even go to the bathroom is a struggle everything is so dark I saw a phyciatrist last week who wanted me back in hospital and I am fighting it another member on here said about tardive dysphoria and I’m starting to think if this is what I have rather than withdrawel I didn’t think it was humanly possible to feel so low it’s crushing I don’t know much about the theory of tardive dysphoria and I am to sensitive to look it up incase it is true can withdrawel hit as hard as this 21 months out I cannot work now and am very isolated so it’s a worrying time for me also since this huge bout of depression has come on I have started to wake up after 3 hours sleep with a jolt and the cortisol mornings are back so more intense than they have ever been is there a connection between the two , just wondering what others thought about the tardive dysphoria Asia says constant going on and of drugs which my doctor did to me for a year and a half I think 6 or 7 medications thanks for any help 

[Altostrata]

This is more of the same, Terry.

 

Whether it's tardive dysphoria or your natural state, you need to do something other than dwell on it. You need to find some kind of regular face-to-face counseling, psychotherapeutic or otherwise. I realize such assistance may not be readily available to you, but if you have access to a psychiatrist, you might clearly request it and get on a list or something. You will have to put effort into helping yourself.

[Terry4949]

I understand alto I have requested to see a councillor but I have been told I have to wait ten months I cannot afford to do anything privately as I am just managing to keep the roof over my head concerning the cortisol mornings have you seen people have it come back after being of the medication after so long my sleep is poor but the cortisol and adrenaline rushes did stop and I havnt had any for 6 months now back with a vengeance I have been doing a mindfulness on line and various breathing excersise at night to promote relaxation even though my sleep is still very poor 2 to 3 hours 

[Altostrata]

Are you on a list that's 10 months long? If not, get on the list.

 

24 minutes ago, Terry4949 said:

my sleep is poor but the cortisol and adrenaline rushes did stop and I havnt had any for 6 months now back with a vengeance

 

Waves and windows, Terry. Have you darkened your bedroom, kept regular hours, get gentle exercise every day, see some natural light every day, stopped using the computer after nightfall?

[Terry4949]

Yes I am on the list but only just been put on it , as regarding my room it’s is very dark no electrical I go to bed at 10 pm and fall asleep very quickly I suppose I am very lucky in that sense but I wake after 3 hours of sleep with that awful cortisol reaction and it seems to have come back much worse than before it cleared up for at least 6 months untill recently now it’s horrendous my sleep hygiene is very good , I fully understand the waves and windows and I know that I have hit a wave this one seems to be the darkest one ever which is why I think I am struggling as I suppose after 21 months I was hoping to see some sort of window I know it’s not linear and also it has bought with it severe apathy which I really have struggled with since the start of withdrawel but it has seemed to have deepened the only trigger to this was waking from a night sleep with a burning headache and I crashed so bad 

[Altostrata]

You may wish to play very soft music, such as meditation or trance music, while you're sleeping. This can reassure your nervous system that you don't need waking up in a panic.

[waves12]

Hi Terry

 

Just reading your recent comments regarding the depression.  I too had dark dark depression for a long time, you did comment on my thread about this.

 

I had posted in my thread that I had been suffering with brutal depression for so long.  It lifted towards the end of August this year and I was then 26 months away from my CT.

 

I really dont  how I hung on so long, it was just awful and I was feeling quite frightened  about it never lifting ever again.

 

One possible helpful thing I did was go out on my bike to the sea every day during those very hot summer months we had, most days I did not want to go but I forced myself and kept telling myself that not matter how I felt this was my therapy and I had to go for an hour even when I really didnt want to.

 

It may not have the complete solution but it seemed to help. I now go out on my bike on any reasonable weather day.

 

I hope this post may help you a little.

 

Waves

 

 

[Terry4949]

9 hours ago, waves12 said:

Hi Terry

 

Just reading your recent comments regarding the depression.  I too had dark dark depression for a long time, you did comment on my thread about this.

 

I had posted in my thread that I had been suffering with brutal depression for so long.  It lifted towards the end of August this year and I was then 26 months away from my CT.

 

I really dont  how I hung on so long, it was just awful and I was feeling quite frightened  about it never lifting ever again.

 

One possible helpful thing I did was go out on my bike to the sea every day during those very hot summer months we had, most days I did not want to go but I forced myself and kept telling myself that not matter how I felt this was my therapy and I had to go for an hour even when I really didnt want to.

 

It may not have the complete solution but it seemed to help. I now go out on my bike on any reasonable weather day.

 

I hope this post may help you a little.

 

Waves

 

 

Thank you for your reply waves12 I have two dogs so I walk them everyday even though I do feel so sick to do it I use this as my therapy I try and walk them for an hour but some days I feel so sick and faint to the point of passing out that I have to cut it short I think that the continued lack of sleep and waking with akathisia kind of symptoms for so long is definitely causing my depression also I have lost my appetite again lately I have no desire to eat and I know I must but up until this bad wave I had been eating well and enjoying food  I know this is all part of the healing process and I am suffering with withdrawels and I think I also had a bad reaction to mirtazapine that has caused me some neurotoxicity I am glad and pleased that your depression has lifted and I hope you continue to heal it’s just seems never ending when we are in a wave and after 21 months I was hoping for some recovery but that’s withdrawel for you 

take care and thankyou 

[Altostrata]

Terry, you've already seen changes in your symptom pattern and intensity. We've told you many times recovery takes a long time and can be very frustrating.

 

You really need to examine your constant negative tone. It seems you work hard to negate anything that might hint of future improvement. We all understand you're in a difficult position, but consider whether you might refuse to recognize improvement and continually remind yourself how miserable you are.

[ChessieCat]

You might find these, or one of them, helpful.  They have a specific one on Distress Intolerance and another on Worry and Rumination:

 

Resources:  Centre for Clinical Interventions (PDF modules that you can work through, eg:  Depression, Distress Intolerance, Health Anxiety, Low Self-Esteem, Panic Attacks, Perfectionism, Procrastination, Social Anxiety, Worrying)

 

Edited November 11, 2018 by ChessieCat

[ChessieCat]

And they have some phone apps too:  https://www.cci.health.wa.gov.au/Resources/Looking-After-Yourself/Other-Resources

[Terry4949]

I have had no choice but to go and see my phyciatrist today as I am really suffering with depression and constant suicidal idealations now he acknowledged withdrawel symptoms long long ago in fact he is a nice man one who actually listens so I told him that the last 4 weeks that the depression I am experiencing is so different to any other depression I have ever had we discussed this and he said to me that he believed I was suffering with melancholic depression that all the signs were there and that because there is a high rate of suicide attached to this he feels I need to get treatment straight away he didn’t suggest any drugs , I have done a lot of reading on this and it is exactly how I feel even though I have been in withdrawel this somehow feels so different , or is it withdrawel I really don’t know what to think people suffer depression before they go on medication that’s why they take them in the first place I am so confused last night I slept for the first time 5 hours in one night that is the first time in over two years and I feel so more depressed for it but if you suffer melancholic depression one of the big traits with it is sleep as it seems to make it worse I could do with some words of wisdom please

[Altostrata]

Sleep is good. If the psychiatrist is going to refer you to psychotherapy, that's good, too. We've been urging that for years. What is his recommendation?

[Terry4949]

I have to go back to see him again at the end of the week as he wanted to discuss with his colleagues about making me a priority he said that they will want to use psychotherapy but may want me to start a drug as well to which I replied no but it’s very hard here in the uk the moment you say no to the med you are none compliant and you don’t want to get better also they tell you that the two work well together I have to tread carefully as they will put me in hospital and take all my decisions away from me and we know where that will lead , why is it that I slept for longer but have felt worse or is that just a coincidence as I usually wake about 2am and that it is but last night I slept untill four and woke in a more depressed state 

[Altostrata]

You will need to tell him you had adverse reactions to the drugs, such as akathisia, and you are hypersensitive to them.

[ChessieCat]

7 minutes ago, Altostrata said:

You will need to tell him you had adverse reactions to the drugs, such as akathisia, and you are hypersensitive to them.

 

You will need to remain calm and assertive when doing this.  It can help if you write a dialogue script and practice what and how you are going to say it.  That way you don't have to think on the spot.

 

If they make a suggestion that you don't want to try, you can say that you would prefer to try other non drug ways first.  The other thing to "have up your sleeve" is I'd like to think about it first.

 

You might find some helpful ideas in these topics:

 

How do you talk to a doctor about tapering and withdrawal?

What should I expect from my doctor about withdrawal symptoms?

[Terry4949]

I have been waking for the last two weeks now really shaking this is noticeable to the naked eye my whole body trembles as if I am cold but I am not and I feel very shakey this has become more aggressive as to say in early withdrawel I would wake shakey and soaked in sweat hot and cold like having the flu but this is not the same could this be down to sleep deprivation or am I lacking in some vitamin my sleep is not good average 2-3 hours a night for over two years and it’s not R.E.M. sleep I am not anxious I just wake up and feel so bad and I feel it very hard to get comfortable I have to get but my body feels like it needs to move , I have not experienced this before in withdrawel so that’s why I’m thinking I’m lacking in something , potassium maybe 

[Altostrata]

Maybe you are lacking in an essential mineral or nutrient. When was the last time you had a thorough medical checkup, including a blood test for mineral and electrolyte levels?

[Terry4949]

I had blood test done a few months ago they said they were all normal , my sleep pattern is definitely getting worse and I think it is having a huge impact on my health my  sleep pattern is as follows 

go to bed at 10pm and fall straight to sleep

wake any where between 12 and 1 pm with a jolt my body will burn and feel hot

slip back in to like a drug induce sleep for  appx 10 minutes then wake again skin burning I feel very restless and this continues to happen every 10 minutes and the symptoms get worse until I have to get up at 4 am 

I do not believe any of my sleep is R.E.M. sleep I feel so fatigued and unrested 

the awakenings are not like the cortisol spikes I used to get in early withdrawel they feel like a heavy sedated feeling ,  once I wake I cannot seem to get back in to the sort of sleep I have like in the first hour I have no dreams 

for me this is a big part of my problem as I feel so much worse after sleep I think withdrawel has caused me small fibre neuropathic damage and I’m wondering that when I’m asleep it gets intensified and that’s what is causing me to wake 

I am going to request some test for mineral and electrolyte levels to see if this will shed any light 

the only way I can really describe the sleep is it is like I have been given anaesthetic and when you come round you keep falling back into sleep for a few minutes then wake then fall back again it’s horrible 

[Altostrata]

Your nervous system is afraid you're going unconscious and is waking you up.

 

You may want to play some soothing, quiet music, such as meditation music or trance music, while you're sleeping. This can help calm your nervous system while you're sleeping.

[Terry4949]

Thanks for that alto I am going to get a little MP3 player and down load some meditation music and put it on low if I can distract my mind it might help I woke 17 times last night between the hours of 1am and 2 am every time I nod off I wake after a few minutes I’m going to try and see if this makes a difference I never thought about it like that my nervous system being afraid of me falling asleep as in unconscious my wife says that when I sleep it is so deep that she can make so much noise and I won’t wake but she says she hears me wake every 5 minutes then I go back to deep sleep and keep repeating the process but she says I jump a lot while I’m asleep but I don’t remember it. 

[Terry4949]

I’m at my wits end now with this sleeping and night time cortisol I have read the thread on insomnia and cortisol on here so many times and implemented everything possible I have been trying low histamine foods to see if that helps as well but the last 6 weeks have been hell hardly any sleep and the moment I lay down I sweat so hot then freezing cold toss and turn every 5 minutes it gets so bad I have to get up I have purchased a realaxation cd and listen to it in bed plus practice breathing for hours but the physical side of it are unrelenting I’m 22 months of now and this is becoming my worse symptom I read that once you start sleeping healing will start to take place but I am not getting any sleep because of the cortisol or histamine I’m not sure what now other than drugs I can’t see how to get sleep I’m shaking from sleep deprivation now is there anything I havnt tried that could help I know many of us on here suffer this horrible side effect but it’s just getting so much worse 

[Terry4949]

Please help , I am now 22 months of but these last 2 weeks my brain burns so bad now I have never experienced anything like this even in early withdrawal from the moment I open my eyes until I close them my head and face burn my  mouth and gums feel like they are on fire this is intolerable now . I haven’t taken any supplements or medications I havnt done anything different it started up about 4 weeks ago and has got so severe over the last two weeks if I go to stand up I nearly pass out , is this withdrawal or is this something else I thought I had been living in hell but this takes it to a new level , I hope someone can help I really do

[Altostrata]

Have you looked into whether you might have an allergy to something in your environment?

 

On 1/14/2018 at 3:56 PM, Altostrata said:

 

Here is part of our exchange from last year:

On 8/5/2017 at 12:58 AM, Altostrata said:

Calms is good.

 

What dosage of lamotrigine were you taking? Do you have any pills left?

 

On 8/5/2017 at 1:33 AM, Terry4949 said:

It was started st 5 mg and then went up to 15 mg was on it for roughly 4 weeks but felt no benifit to be honest , doctor just stopped it , like all the other meds c/t , is it possible that now I am of 5 months I have akathesia can it just appear 5 months out , I used to be bad in the morning and did improve slightly as the day went on , now it's all day , I have got some l-theanine I might try a small bit to see if it helps calm me down , 

 

On 8/5/2017 at 2:39 PM, Altostrata said:

Terry, do you have any lamotrigine tablets left?

 

Lamotrigine is a very tricky drug. Often a lower dose works better than a higher dose. It could be that you would feel some relief at 2.5mg where a higher dosage didn't do anything.

 

Monica was on high doses of several drugs. She blamed some of her withdrawal syndrome on lamotrigine, but those symptoms might have been caused by any of the drugs or the cumulative effect of coming off a combination of them.

 

Lamotrigine does require tapering to go off, but it is not a particularly malicious drug.

 

Terry, my guess is you didn't give lamotrigine enough of a chance, you and your doctors were expecting miraculous relief instead of incremental relief, and you escalated the dosage and abandoned lamotrigine too soon.

 

Your posts here usually simultaneously express a strong demand for a drug solution and a strong aversion to a drug solution. We've advised you to try drugs carefully at low doses and avoid going on and off drugs repeatedly, yet you've made numerous precipitous changes for a year. Once you decide on a course of action, you need to find the determination to follow it through, no one else can do that for you.

 

I strongly recommend you contact Dr. Healy and figure out how to spend a little time in Wales, if that is required for him to consult on your treatment.

 

In terms of drug treatment, we can't do much for you here, it's up to the people who can prescribe drugs -- in partnership with you, that is. You need to step up on this and not passively let doctors tell you to go on and off drugs.

 

 

[Terry4949]

 I havnt really change in my environment anything different over the last few years to say that I can point anything out , can you get tested for toxins that could be causing this can I become sensitive to chemicals or food after 22 months of I have never suffered with food intolerance or had any allergies to my knowledge . But what ever has happened it has set my head on fire over the last 6 weeks as I say a completely different feel to anything I have experienced in all the years in withdrawal it seems to be very intense over my left eye and left cheek bone . The doctors are refusing to give me any medication like lamotragine as they have all ready prescribed it twice also because I had bad akathisia they are now covering their backsides as none of them want to take responsibility for the damage they have caused , I think they are starting to realise the multiple c/t from many medications and switching them constantly has caused the problem , here in the uk there is a big drive at the moment and there is a lot coming out now about the amount of seriously harm people from the meds . I wonder if the increase in brain burning has anything to do with my pulsating tinnitus which has got a lot louder over the last few months maybe it’s restricted blood flow