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Terry4949

Terry4949: Withdrawal help

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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 

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Altostrata

Yes, Terry, you can become allergic to something in your environment over time.

 

You'll need to rule out a medical condition that might be causing some of your symptoms. We don't have any additional suggestions for you.

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powerback

Hi terry ,this is scandalous how your suffering ,im furious ,so sorry for your torture.

Its more than likely the meds doing all this ,your system is ridiculously sensitive.

Gluten,sugar,soya,dairy ,trans fats ,smoking ,alcohol ,give up all these to see if you are now super sensitive ,your in enough torture to try anything ,this will need to be done for months .

 

Is there definitely no mould spours or toxins in the house ,all harsh cleaning products (bleach) get rid of them .

Wash with only soap (I do,I now never get a rash on my neck I had for Years),fait in nature is the brand I use.

 

I put this question to the mods and members,can we look into a go fund me page to send terry to a specialist or to DR healy to be looked at .

Hang in there mate ,you dserve peace and rest 👍 .

 

 

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ChessieCat
7 minutes ago, powerback said:

I put this question to the mods and members,can we look into a go fund me page to send terry to a specialist or to DR healy to be looked at .

 

Hi powerback,

 

This is very caring of you.  However, my personal opinion (ie not as a mod but a regular member) is that there are lots of members on this site who are in a bad way and would like to get financial support to get specialist treatment or so they can take the brand name of their drug or have to pay for liquid because it isn't subsidised, or funded so they can take legal action.

 

New Zealand members are a good example of this where the government will only subsidise generic venlafaxine (Enlafax) and many people are reporting that they are experiencing issues taking this new generic version.  If they want brand Effexor they have to pay for it themselves.

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powerback
33 minutes ago, ChessieCat said:

 

Hi powerback,

 

This is very caring of you.  However, my personal opinion (ie not as a mod but a regular member) is that there are lots of members on this site who are in a bad way and would like to get financial support to get specialist treatment or so they can take the brand name of their drug or have to pay for liquid because it isn't subsidised, or funded so they can take legal action.

 

New Zealand members are a good example of this where the government will only subsidise generic venlafaxine (Enlafax) and many people are reporting that they are experiencing issues taking this new generic version.  If they want brand Effexor they have to pay for it themselves.

HI CC I hope your well,I understand im a little impulsive with that comment so I apologize for puting pressure on the site like that ,it was not my intention.

I totally agree with you .

I am in the same position in relation to generics but in my opinion the state terry has suffered is beyond this .(apologies terry if your triggered) .

God bless you mate , your in my thoughts.

 

 

 

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Terry4949
5 hours ago, powerback said:

HI CC I hope your well,I understand im a little impulsive with that comment so I apologize for puting pressure on the site like that ,it was not my intention.

I totally agree with you .

I am in the same position in relation to generics but in my opinion the state terry has suffered is beyond this .(apologies terry if your triggered) .

God bless you mate , your in my thoughts.

 

 

 

Thankyou powerback for your kind words and for thinking of me in this very trying time . I am unable to try to do many things to help myself In the way of testing and alternative help as I am not working so various things are very hard for me to fund , I don’t drink alcohol and have never smoked I eat healthy even though at the moment it’s getting hard to be able to afford the quality foods when you are not working , like many people on here I am very sensitive even to the basic supplements even fish oil sets me off big time and takes me days to recover like wise with magnesium I was hoping that after 22 months things would have settled down . The constant burning of the head is becoming a big concern for me now as it’s not really been a feature of my withdrawal to this sort of level , I shall how ever try and look at trying to find some explanation to it wether it be a chemical in the home or something else, this shore has been a long road for me . Again thank you 

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ChessieCat
11 hours ago, powerback said:

in my opinion the state terry has suffered is beyond this

 

Nobody is disputing this fact.  However, there are many members on the site who are also in very bad situations.  I won't mention any by name, but I know you have been around SA long enough that you would be familiar with the situation of other members.

 

Members on this site can care a lot about what other members are going through.  However, being on the internet is different than knowing people in "the flesh".  The same as for any type internet forum or platform (eg FB), we cannot know the whole story for any person.

 

And SA is already doing a wonderful FREE service providing advice and support which is not available in the real world or even on the internet.  We don't even have to pay a joining fee to pay for the hosting of the site.

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Alanmane
47 minutes ago, ChessieCat said:

 

Nadie está disputando este hecho. Sin embargo, hay muchos miembros en el sitio que también están en muy malas situaciones. No mencionaré ninguno por su nombre, pero sé que ha estado alrededor de SA el tiempo suficiente como para estar familiarizado con la situación de otros miembros.

 

Los miembros en este sitio pueden preocuparse mucho por lo que otros miembros están pasando. Sin embargo, estar en internet es diferente a conocer personas en "la carne". Al igual que para cualquier tipo de foro o plataforma de Internet (por ejemplo, FB), no podemos conocer la historia completa de ninguna persona.

 

Y SA ya está haciendo un maravilloso servicio GRATUITO que proporciona asesoramiento y asistencia que no está disponible en el mundo real o incluso en Internet. Ni siquiera tenemos que pagar una tarifa de inscripción para pagar el alojamiento del sitio.

You are angels

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dj2010
12 hours ago, Terry4949 said:

 I am unable to try to do many things to help myself In the way of testing and alternative help as I am not working so various things are very hard for me to fund , I don’t drink alcohol and have never smoked I eat healthy even though at the moment it’s getting hard to be able to afford the quality foods when you are not working ,

 

Hi Terry, if you are in the Uk then you are entitled to PIP and ESA, this will give you approx £150 a week plus if you claim any other tax credits you will then receive the disability element which is another cash boost,

 

it might seem like a complicated process but if you book a appointments at citizens advice they have pip specialists who will do the whole application for you for free,

 

you should print out out pages from your thread as extra evidence, 

 

it took around 6 months from start to finish as the dwp are really slow at processing the application but when the application is complete you will receive a big back pay from the moment you started the application, I believe the process has now speeded up though

 

if you need any advice let me know as I’ve been through it all

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Tattyapple

How are you terry ?

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Tattyapple

Iv just read through your thread and it resonates a lot with me.

i too was diagnosed with melancholic depression, sleep makes me feel a lot worse. If I sleep more more than 5 hrs straight I feel agitated and suicidal all day, it is a feeling I would not wish on anyone,

 

Sunny days help a little. The winter is difficult.

 

Iv had akathesia for 5 years. My muscles are so stiff in my neck I have little movement.

 

let me know how you are 

 

take care 

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Terry4949

I am at 24 months of all meds now and to be honest I have seen no improvements things are worse now than ever the deep daily depression is all to consuming and the head pain is so much worse my sleep is about a hour a night and then I wake feeling like I have been chemically injected the fatigue now is so bad and I’m in constant pain , since I last posted I have been trying various coping methods but not had much luck I did get some support from a cbt and a councillor but this has not made any difference to my situation unfortunately the phyciatrist who I am under says he believes I have Tardive dysphoria and he does except that the damage has come from the antidepressants he says that I have a depression bought on by the drugs which he says is if not more or less hard to treat , I keep trying to motivate myself and eat well and I read the success stories as much as possible but I am one of the unfortunate ones that don’t seem to get Windows only waves .

slowly I am becoming more sicker and beginning to get house bound the lack of energy and the apathy are very hard to live with these days but I still try and walk my dogs everyday in hope that if I keep pushing myself the tide will turn . I have lost a lot of weight as well which I dont think is helping and I have been seeing a chiropractor about my headaches but this has not shown any benefits as yet everything seems worse after I have slept for a hour .

the supplements I can still no longer tolerate even fish oil and magnesium seem to be still to stimulating so I have given up on all them I was hoping at 24 months that things would get easier but I know this can be a long road the trouble is that I have to keep away from doctors they just want me on more meds my family are the same they still don’t get this protracted withdrawal and they all still say I’m not trying to help myself you know how it goes . 

So there’s my up date and current position I hope you are all on the road to recovery and I wish everyone well 

 

 

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Altostrata

How often do you walk your dogs? How do you feel before and afterward?

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Terry4949
On 2/20/2019 at 7:56 PM, Altostrata said:

How often do you walk your dogs? How do you feel before and afterward?

Hi alto I walk my dogs every day usually once if I can I get out over the fields for a hour but some days it takes a lot out of me , I usually struggle to get motivated the apathy can be strong on certain days but I push myself as my dogs need a walk , if I’m having a bad day they get a walk twice round the village once in the morning and once at night that usually takes about half a hour after my dogs have sniffed everything , I must admit I’m glad I have them or I think I wouldn’t get out of the house at all . Walking the dogs doesn’t seem to lift my mood however I try and tell myself that I have achieved something and I know my dogs are happy so that’s good  , 

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Altostrata

I'm sorry you're feeling so poorly, Terry. Please review our discussions in this topic about lamotrigine.

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jonnypeters1234567

Have you had any easing of symptons Terry?

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Terry4949

Just to update seems I havnt posted in a while I’m now 27 months off all medications and I have hit a really bad wave my depression has returned with a vengeance and once again I am being hit with the early morning cortisol awakening which has left me feeling very poorly most of the day I feel very low and very poorly I feel very dizzy and faint I feel like I have like dystaunomia symptoms back again I felt like this in the first 6-18 months then thing eased but I feel like I’m right back at square one .certain things had eased a bit for me I was getting 4 hours sleep and I did have a bit more energy my depression had lifted to a level where I could get through the day and my appetite had returned but out of the blue I felt really unwell and everything has returned full blown , no appetite feeling very unwell especially in the morning even that horrible feeling of wanting to cry all the time has returned and fatigue like nothing I have ever had , my pulsating tinnitus has got worse especially if I lay down and first thing in the morning . 

Im sorry that I can’t bring you more positive news I was hoping after this amount of time I would be able to bring some encouragement to others with some healing news , I’m not sure what has bought this vicious return after so long out but I wish it would cut me some slack 

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Altostrata

Sorry to hear you're still going through this phase, Terry. Please review our prior responses in this topic.

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Terry4949

Just a update on my situation I’m now 30 months off all the meds and no improvements my depression has taken a turn for the worse and I have the horrible cortisol mornings back I’m only getting about 2 hours of toxic sleep a night then wake tossing and turning burning hot covered in sweat it’s unrelenting my headaches are still bad and I seem to be getting a lot of upper jaw pain the crying spells are bad again still not had a window mybakathisia isn’t as severe now but nothing has changed much I have lost so much weight and muscle now it’s getting very worrying 

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Altostrata

Terry, please read this topic again. We've given your our best guesses at what you can do, but you decided to push through it. I don't think there's anything I can add.

 

Hang in there, things tend to change.

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Terry4949
9 hours ago, Altostrata said:

Terry, please read this topic again. We've given your our best guesses at what you can do, but you decided to push through it. I don't think there's anything I can add.

 

Hang in there, things tend to change.

Thanks for your reply I am doing my best to push through but the symptoms are so hard every day is a struggle I did visit my doctor and asked for lamotragine but they won’t give it to me there is a lot of pressure here in the uk about the over prescribing of medications and they are clamping down my doctor doesn’t want me on any medications full stop I know I’m not the only one who is suffering I think the fact that I was c/t of so many drugs has complicated matters and I know the no sleeping is having a massive effect with the constant blasting of cortisol every 10 minutes I just wish I could find something just to release the symptoms if just a bit 

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Terry4949

I know this is perhaps going over a lot of old ground but I am now coming up to 3 years off all meds most were c/t by my doctor but I have been suffering for over 7 years now when I hit tolerance from Effexor the thing is I haven't seen any improvements and somethings have got far worse I have not had a single window and I am truly loosing hope of any sort of recovery I sleep only 1-3 hours now and still wake with that awful feeling of cortisol that leaves me shaky and hot and bothered I feel more fatigued than ever now this has not let up in 3 years even though I practise very good sleep hygiene I go to bed at the same time every night no light or noise or electricals but nothing has changed my symptoms are now 

 

severe depression 

daily suicidel idealations been like this for over two years daily 

anxiety 

burning skin 

severe head jaw and neck pain not had a day away from this in over 18 months 

lack of appetite 

very emotional could cry all day 

apathy and anhendonia constant , this I truly hate 

anger 

sensitive to light and noise 

severe fatigue 

 my brain feels like I have the onset of dementia 

severe heat intolerance 

 mild akathisia 

i have this feeling that time stands still 

a nervous energy through out my body that cause restlessness

plus many other symptoms 

 

I have been trying different things over the last 6 to 12 months but have found no relief I have had 30 sessions of acupuncture no relief what so ever I have seen a homeopathic doctor who has been treating me with very small doses but haven't found any relief in fact one remedie made things much worse after taking it I have tried relaxation classes but I'm to wired with the physical symptoms to relax enough as I feel so overwhelmed all the time I did try 6 lessons of meditation but again I just can't switch off from my symptoms I have been tested for most things and bloods have all come back normal even though I do have high ferritin levels the last 6 months I have been on a low histamine diet but I do eat healthy don't drink alcohol and I have never smoked but nothing has helped I have run out of things to try I have a draw with over 50 different supplements which I have tried but I'm so sensitive can't even take fish oil or magnesium .

i think what I'm looking for is some words of hope and encouragement from someone  I know people do go on and recover but for me these three years have truly been hell and I feel I'm getting worse when you have a slight window at least it gives you some hope but mine has faded any suggestions would be most welcome , I did not have a chance of reinstatement and because I was stopped of so many drugs which one would I have reinstated but I know I had a bad reaction from the first pill of mirtazapine I think that put the nail in my coffin as to speak 

 

 

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Altostrata

Terry, I'm sorry this continues to be so difficult. It can take a long time to recover from adverse drug reactions.

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Terry4949
10 hours ago, Altostrata said:

Terry, I'm sorry this continues to be so difficult. It can take a long time to recover from adverse drug reactions.

Thank you alto I know you understand and have lived through it if only I could catch a break the worst two symptoms for me are the anhendonia state and the early morning cortisol wake ups that leave me feeling so unwell I feel it going through my body all day I just have to get up or I feel so sick which limits my sleep to 1-3 hours I did think about trying serephos but as my tolerance to supplements is very low I'm worried about making things worse my doctor wants me to try voldoxan but I am not using another pharma drug again I have had the early morning cortisol wake ups now for about 7 years but now they seem more intense I worry that it is now permenant also the anhendonia seems to have got more intense I used to be able to watch some to and read but even that is hard now as I feel so empty I still get out each day to walk my dogs but find very little pleasure and depending how bad the cortisol mornings are it can make me feel very sick , I worry that the longer this goes on the more damage I am doing to my brain and that it will never recover 

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Altostrata

Can you go to bed earlier to get more sleep? This may help you feel better. Could be you'll have to cope with early morning waking for a while. Lots of people get up very early in the morning, but they go to bed early, too.

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Terry4949
13 hours ago, Altostrata said:

Can you go to bed earlier to get more sleep? This may help you feel better. Could be you'll have to cope with early morning waking for a while. Lots of people get up very early in the morning, but they go to bed early, too.

I have practised very good bedtime hygiene for a very long time now my room is completely dark it's cool and I have no electricals I go to bed at 10 pm and to be thankful I fall a sleep with in minutes I then sleep any where from 1-3 hours but when I wake I feel like I have only been asleep for minutes I have no dreams it's like being knock out and then wake I can't go to sleep any earlier as  I can't sleep but I can't go to sleep any later because I am ready at 10 o'clock I do think the lack of sleep is really part of my non healing process I just wish I could break the cycle the cortisol spikes don't help though 

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UnfoldingSky

Terry I am truly sorry to read you are still suffering so much.  I went three years where I also had basically no windows, and had most of the symptoms you describe and many others besides, I know how hard it is. 

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Altostrata

What happens when you wake up? Have we discussed this before?

 

Read this:

 

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Terry4949
On 17 December 2019 at 7:29 PM, Altostrata said:

What happens when you wake up? Have we discussed this before?

 

Read this:

 

I have read this thread many times and it seems to be this is what is happening to me last night I fell a sleep at 10 pm and slept for 40 minutes then woke full of adrenaline I can't tolerate magnesium and B6 sends my symptoms through the roof I can not tolerate any sound the tv or music played quietly keeps me a awake but last night after I woke I just was soaked in sweat and so hot this took 6 hours to stop if I do fall back to sleep it's usually only for 10 minutes and then it all repeats it's self this has never abated in nearly 5 years now every night I don't think that healing will happen until this sleep gets better but I feel like I'm stuck in this endless cycle 

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Altostrata

Have you tried sleeping upright in a chair? This may trick your nervous system into thinking you're not sleeping. Shallow sleep is better than no sleep.

 

You'll want to keep the room very cool.

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Terry4949
11 hours ago, Altostrata said:

Have you tried sleeping upright in a chair? This may trick your nervous system into thinking you're not sleeping. Shallow sleep is better than no sleep.

 

You'll want to keep the room very cool.

No I haven't I haven't thought of that I will try it for a couple of nights to see if it makes a difference the last few nights I have fallen a sleep at 10 pm my normal time with no problems but woke after between 40 minutes to 1 hour but it has felt like I have been a sleep for hours the lack of sleep and adrenaline is certainly hampering my recovery I think if I could catch a break I may see some improvements  

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Rozon1

Hey @Terry4949 how are you doing?

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Terry4949

Hi Rozon1 unfortunately I’m still sick 38  months off all meds and really struggling somethings have even got worse I am sleeping about 3 hours a night now but I have constant head pounding and pulsating tinnitus so it makes my sleep very difficult 

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Altostrata
1 hour ago, Terry4949 said:

I am sleeping about 3 hours a night now

 

Is this an improvement? How long has this been happening?

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Terry4949
On 5/23/2020 at 8:36 AM, Altostrata said:

 

Is this an improvement? How long has this been happening?

 The sleeping is slightly better which is a slight improvement but the severe headache has been for about 18 months now and the pulsating tinnitus has got a lot worse especially when I lay down 

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Altostrata

Please mark that down as an improvement.

 

Please clarify your signature, attaching the years to these events:

Quote

Currently on 30mg mirtazapine appx 5 months , high anxiety, March cut dose 22.5 mg going on to liquid still no improvements with the depression , also started sept 2015 200mg pregabalin , currently on 22.5mg mirtazapine tablet form doing really badly. Cut beginning of May remeron 20mg still bad anxiety,August 15mg remeron ,100mg pregablin , severe depression headaches anxiety , oct 2016 doctor stoped pregablin c/t , 15mg mirtazapine still no let up in physical symptoms ,high anxiety ,Nov 2016 remeron 13.5 mg , Jan 2017 mirtazapine stopped flouxetine20mg added by hospital admission, no choice , doing really badly , akathesia suicidel ,, Flouxetine c/t by hospital after 7 weeks 20mg daily

 

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