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tjdeepthinker

tjdeepthinker: Hi From Cape Town, South Africa

82 posts in this topic

Hi,

 

I am currently withdrawing from Seroquel. I have slowly gotten myself off a large cocktail of drugs, the most recent being lithium and diazepam (off lithium since early last year, and diazepam about November last year) I did not realise it would be a bad idea to go off the last 25mg of Seroquel all at once. I thought that would be a small difference. It I only recently that I have realised that I was experiencing withdrawals at all. I have been a bit ill as well and had an operation for stage four endometriosis last year. It is hard to tell what symptoms are from that and what is the withdrawals. Looking at it now, I tapered too fast. I do not think it is a good idea to go back on now. It has been two months, so I guess I have to push through it.

 

 

I am looking to connect to people in my area, (CAPE TOWN, SOUTH AFRICA), to start a support group, or for someone to talk to. I feel very alone and scared. I think that perhaps if I can talk to others who are experiencing something similar it would help.

 

Thank you for reading this!

 

Tammy

 

 

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Welcome Tammy,

 

I'm sorry to hear you are not feeling well. Its quite possible you are having withdrawal symptoms from stopping seroquel from 25mg, even though that's a fairly low dose, it should be tapered. We recommend tapering by 10% every 4 weeks. Its possible you may also still be experiencing withdrawal from coming off lithium and diazepam. How did you taper these?

 

If you could give us a few more details of the drugs taken, dates and how you stopped them, that would be helpful.

 

How were you feeling before you started tapering the seroquel? What symptoms are you having at the moment?

 

We have a section where members can connect with people from their own area, here is a topic which explains it:

 

"Check in" topics: SurvivingAntidepressant.org members near you

 

It looks like we don't yet have a South Africa thread, so you are welcome to start one in the Relationships forum.

 

When we have a bit more information about your drug history, we will be able to offer some suggestions, you will find a lot of friendly help and support here, I'm glad you found us.

 

Petunia.

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Hi Tammy ,  welcome to the site.

Not going to confuse you at this stage by asking more questions , just wanted to say Hello.

 

Best wishes ,  Fresh

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I have sent you a private message. Let me know if you dont know how to access your messages.

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Hi again everyone. Sorry I did not reply earlier. have been kind of surviving. My symptoms at the moment are very bad. I cant go back on the seroquel now, I tried last month and symptoms just got worse. It is too late to go back and taper. I have not slept for three days and three nights. Is there anyone who can talk to me about tips for handling the symptoms? Symptoms: Insomnia, Akathisia, Dystonia, and 'burning' on my arms and neck, nausea, dehydration, shakes, and heart palpitations I have managed to stay hydrated. I have been hospitalised twice and put on a drip. I have not yet found a doctor who will listen to me. The symptoms don't seem to come up on any of the blood tests, or on the ECT so far. I have tested thyroid and many other glands. All came back healthy.

 

It seems to follow my menstrual cycle and is worse in the night and mornings as well. This is the first time I have not slept at all. Every time I fall asleep I wake up again immediately. I have only been managing one hr of sleep at a time for a while now.

 

I am very scared and sleep deprived. No neuroleptic drugs help at this stage. Has anyone else experienced this? Does anyone know of a doctor who is familiar with this who would be willing to talk to me? Or talk to my GP here in SA? Does anyone have a recommendation for helping with sleeping? Or just reassurance that you can go without sleep for long periods of time and survive it!

 

Sorry if I am not putting this in the right place. I am functioning at low brain capacity due to the lack of sleep at the moment.

 

Thank you to everyone who replied!

 

Tammy

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Just read the earlier posts. A bit more of my drug history:

 

Tapered off lithium 1000milligrams a day over 4 months last year, at recommendation from a psychiatrist. I know now this was way too quickly. Was on that for more or less ten years

 

Tapered down to 25 milligrams Seroquel at the same time. On that for about six years

 

Stopped diazepam 5 milligrams 'as needed' cold turkey about November last year. I was taking it every 2nd day or so. Also on that for about six years

 

Did not realise I was going through withdrawals. Sort of stabilised. Then went off Seroquel 25 milligrams cold turkey.

 

My body went into a kind of over drive. I did not sleep well for a few days, and then I slept really well, in fact all the time for about 3 weeks. Then the bad symptoms started. To add to the above, I am experiencing numbness from the waist down, difficulty walking or exercising most days, polyuria, fevers, low blood pressure, cold extremities, hot flushes, dry mouth and throat, shakes.

 

I have quite a few windows though. Some afternoons I am have been almost symptom free. There is hope there for me! The scariest is trying to stay hydrated when the vomiting and diarrhoea hit, and of course worrying that I will die from lack of sleep. I am pretty much at a stand still.

 

I am so grateful to this website and all of you for replying to me! It has been a very scary road and I am realising now that this is only the beginning. I realise I may well still be withdrawing from diazepam as well. One of the times I was hospitalised that doc gave me a valium, that made it so much worse. Did not help at all. I don't see going back on meds as an answer at this point. I wish I had known before I started this!  

 

Thank you thank thank you all!

 

Tammy

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Hi tjdeepthinker,

 

It is a bit scary when we become sleep deprived. Our anxious minds tend to run 100 km per hour. I'm not sleeping that well lately, but I find rooibos tea, really helps to calm me down.

 

Have a cup of rooibos tea before bed. I hope it helps to calm your mind.

Going through wd symptoms is difficult, but it eventually resolves. Best wishes, hopefull.

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tjdeepthinker,

I am so sorry for your suffering.  I also have dystonia and many other curses left on my body from these medications.  I have everything you describe above, except vomiting.  My dystonia and myoclonic jerks are so bad that I am unable to exercise, barely to walk.  I use a walker or cane in order to walk if I have to go more than a few steps.

If you are able to exercise at all, you are doing better than I am and that is a reason to be hopeful.

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Hi,

 

I still have not slept. I took a third of a mg of atavan. It does not seem to have helped, maybe made it worse. I don't know what the right decision is. I am rather desperate at this stage. The not sleeping is so scary. I probably should not have taken that. I just want so badly to sleep. Every time I try to sleep there is ringing in my ears and my whole body feels restless and now I panic because when I do fall sleep (before the last three days, which I have not had any sleep at all) I wake up in panic. I wish I knew what to do. I wish I had a doctor to talk to.

 

Wiggleit: 

 

That sounds awful! you are so brave and strong to survive that. Have you ever gone a very long time without sleep? Have you ever caved and taken the drug again only to realise it isn't going to work?

 

Hopefull: Rooibos tea seems to affect the polyuria. I am dehydrated.

 

I am so frightened. How does one survive this? My family are falling apart around me. I have been to doctors. Noone seems to be able to help me.

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PS Hopefull: But thank you for the advice! Sorry, thought I wrote that. It works when I am not dehydrated.

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I'm very sorry, tj.

 

You have withdrawal syndrome. All you can do is get from day to day while your body heals itself. Please see the Symptoms and Self-Care forum for suggestions about how you can support your body in healing.

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You are welcome. I know how it feels to wake up in panic. Ringing in the ear happens to some people while in WD.

I have been practicing mindfulness before bed. It has helped me. If you can manage 10 min 8n the morning and 10 min. before bed, you will see the difference.

I listen to Tara Brach, it is for free. She has short and long guided meditation.

If you are bothered by the ringing in the ears, listen to relaxing music to help you sleep.

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Hopefull:

 

Thank you for that lovely meditation suggestion. I was using Jon Kabat ZIn before the withdrawals really kicked in a few weeks ago. But I know his taes off by heart and for some reason I cant stay calm. Plus they are too long. Ten mins I can manage. Alas still no sign of sleep. I am now on four days and four nights. Hoping  against hope for another window soon.

 

To Altostrata,

 

Oh dear. I was going to try reinstating, but the symptoms are so severe now, I think I should take your advice. Do you perhaps know of anyone I can talk to about not sleeping for long periods of time? This is a current huge stressor for me. Currently my symptoms just don't allow sleep. I think I manage to pass out sometimes for a second or two, but then wake up in extreme panic and adrenalin. I am also struggling to sit still at all. It calms me down a lot to hear people say that it is not killing me to go this long without sleep. I took a third of a milligram of Ativan today in desperation and immediately my symptoms worsened, especially the pain on the skin of my hands and arms. I guess that is what will happen with them all now. Any suggestions for alternatives to help sleep? I took some allergex because that used to knock me out, but to no avail. made me extremely thirsty and I think dehydrated me again. I am still taking loratidine (antihistamine) daily, I am too scared to change that and get very sick. What are your thought about antihistimines? I have been on that drug since I was twelve. I am also taking iron supplements and a heart enzyme, as well as omega three at recommendation of my doctor. Any thoughts on those supplements?

 

Feels so much better to be talking to people who have some answers! Lifesaving!

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PS extreme symptoms back. Still not sleeping. I am scared. I need help. My pupils are getting bigger and smaller all the time, anyone experience this?

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 update: Had a wonderful window today from about ten where some symptoms lifted. With meditation was able to finally get about an hours sleep at lunch time. It gives me hope. Starting to accept this a bit more now. Thank god I slept a bit!

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Many people have been where you are right now, it is such a desperate place. Obviously, they have been well enough to write here, so it probably isn't representative of all people. But they make it through--and hope never to go back. MammaP may have the longest-running insomnia, if you want to read her thread.

 

Trying to stay calm, resting as possible, and releasing the "demand" for sleep is most important, I think. I have never completely missed sleep for more than one night/day, so I am not an expert, but I keep my alarm clock covered both to keep light away and to keep me from focusing on being awake. Magnesium is a help for some people--it is depleted by stress. I also benefit from Epsom salts baths if not taken daily. Staying away from the health care system can be important...as you have experienced, drugs just make a sensitized nervous system less stable, Read in the symptoms forum as able. Some ideas might help and you will at least see you are not alone.

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Tj

 

I have not slept for long periods of time. It won't kill you but it is torture. My absolute best advice I can provide is give up on the idea of sleeping and focus on resting your mind and body as much as you can. I have used sleep hypnosis apps on my iPhone to achieve this. If you rest you won't be so devastated tether next day. And, sleep will come. Having windows shows you it is possible, you are not broken. You do still have the capacity for sleep regardless of how elusive it is.

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Hi TJ, I will answer you message here in your thread.  I have chronic insomnia which has been a problem for many years but much worse during waves of withdrawal when I can go for days without any sleep. People will say things like "you must be sleeping sometime you just don't know it", and that is so annoying because I know when I am awake all night, as Dalsaan said it is torture!  I have learned not to expect sleep too, and focus on resting my body, while thinking about positive things that make me feel relaxed. It is hard when you feel so ill but you can train your mind not to wander into the darkness. I have some sleep sounds on my clock that help, rainforest or ocean waves are my favourites, I can imagine myself there, in a tent because I love camping.  It always changes and after some days of no sleep I then find myself sleeping for 90 mins at a time which makes a huge difference. Maybe 2 90 minute sleeps through the night and one 90 minutes in the afternoon.  That is amazing, and I feel so much better after a few days like that. There are times I am so desperate I would take anything and understand people who give in but somehow I managed to get through without, except for one day when I took half a child dose of a flu remedy which didn't help that night but I did sleep in the daytime the day after when I had a massive hangover from it! 

 

I do find that magnesium helps me to relax, and have taken inositol which seems to help a little but nothing makes me sleep a whole night. 

 

You will find some information on what supplements have helped others with sleep here.. http://survivingantidepressants.org/index.php?/topic/606-important-topics-about-tests-supplements-treatments-diet/ If you try anything, start with a very low dose because we are very sensitive in withdrawal. 

 

And a topic on sleep problems. http://survivingantidepressants.org/index.php?/topic/555-tips-to-help-sleep-so-many-of-us-have-withdrawal-insomnia/

 

The most important thing is not to obsess about sleeping as that makes it worse and then you can't sleep for worrying about it. 

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Hi,

 

I still have not slept. I took a third of a mg of atavan. It does not seem to have helped, maybe made it worse. I don't know what the right decision is. I am rather desperate at this stage. The not sleeping is so scary. I probably should not have taken that. I just want so badly to sleep. Every time I try to sleep there is ringing in my ears and my whole body feels restless and now I panic because when I do fall sleep (before the last three days, which I have not had any sleep at all) I wake up in panic. I wish I knew what to do. I wish I had a doctor to talk to.

 

Wiggleit: 

 

That sounds awful! you are so brave and strong to survive that. Have you ever gone a very long time without sleep? Have you ever caved and taken the drug again only to realise it isn't going to work?

 

Hopefull: Rooibos tea seems to affect the polyuria. I am dehydrated.

 

I am so frightened. How does one survive this? My family are falling apart around me. I have been to doctors. Noone seems to be able to help me.

On a few occasions I have been completely sleepless.  Usually, I can get at least four hours of sleep per night.

 

I did not take the drug again because I was too scared to take something again that had ruined my body, brain, and my life.  I'm not brave.  I'm completely physically disabled and hopeless.  I have read that only 1 in 10 cases of medication-induced dystonia are curable, and there is a better chance for people to recover who did a slow taper.  I did a fast taper/cold turkey because of my incompetent doctors, so I have every card stacked against my chances of recovery.

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Hi tjdeepthinker,

 

If you can keep practicing mindfulness even in bed, before going to sleep you will see improvement.

 

It helps me. Good luck . :)

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Tj ,    it isn't too late to go for a successful outcome at reinstating.

 

On May 31 you note that you tried reinstating last month with a bad effect.  What dose did you take , for how long?

 

If you took a regular dose you likely had an adverse reaction.   The site recommends trying a small dose , like 1-2mg

Try reading the topic at the top of the tapering section "Reinstating to Stabilize and Stop W/d Symptoms".

 

Three months out isn't too long to give it another shot.   It's the only other option to riding it out , and you know that might

take many months.

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Hi I have been hospitalized because of my severe protracted withdrawal syndrome. Please do not offer advise as I am trying  to figure this out and am very scared. Any words of encouragement at this point would be appreciated to know that maybe I will get through this. I am terrified and trying to stay calm. I have decided to blog about the experience so that maybe others can be helped later by my experience.

 

Here is my blog. please let me know if you can't get though.

 

Thank you all. It really helps that there are people out there who care. Just knowing that there may be someone following my story and caring about me is a life saving thought.

 

http://tjdeepthinker.wordpress.com

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You ARE going to recover from this tj.    

If you felt too unsafe at home , then  it was a sensible move to go to hospital.

They'll help to get things under control , and that's the most important thing at the moment.

 

:)

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Hi everyone, SURVIVING! The 'inmates' here are wonderful people! Thank you Fresh for your kind words.

 

I am going to keep blogging as I go. I guess that is my coping mechanism. Also I have a lot of time on my hands, lol.

 

Drugged to the eyeballs right now and surviving it. !!

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It would seem I have been successfully reinstated. Almost symptom free, drugged to the eyes. Now I start again.

 

Any advise about withdrawing from diazepam and dormonoct?

 

New meds level:

 

Seroquel 25 mg

Diazepam 20mg

Dormonoct 2 mg

 

Eeeek.

 

http://tjdeepthinker.wordpress.com

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How much diazepam were you taking last year, when you went off?

 

You are now taking two benzodiazepines.

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Yip

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Stabilised, I think, sick with flu, lost my job, drugged to the eyeballs, alive, and starting again... And this time to withdraw extremely slowly....

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Good to hear you've stabilized. Sorry to hear about the job.

 

Please put the drugs you're taking with their dosages in your signature.

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Added to signature. The big thing was getting me to sleep. That was crazy. So now I'm on a much higher dose than before. Now starts the trying to safely withdraw. And trying to afford these ridiculous poisons. EEk

 

Feeling numb and a bit sorry for myself because it feels like starting all over again. I was so close :(

 

TJ

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Hello,

 

Seroquel is my worst drug. 25mg may seem small, but for me, it is a huge amount.

 

I am very alone. I have made three withdrawals. each one extremely painful and terrifying. It is dawning on me that I am going to be extremely sick for a long time. I am finding it hard to see how I can survive this. I still have hectic withdrawal symptoms monthly, as well as when I make a withdrawal. My main and worst symptom is anything to do with sleep. I get night sweats. I am now taking three different drugs, all for sleep. I am down to 7,5mg Pax (Valium) , 2mg dormonoct, 25mg Seroquel. Is there anyone out there who knows of a doctor who could perhaps talk to my doctor about this. I am finding no help and it gets harder each time. I guess this is what everyone goes through. At least I sleep, but I suspect I will not sleep much as the withdrawals bring the drugs down.

 

I am in a dark space today. I am sick one week out of every month. One week recovery. Two weeks normal.

 

I don't know how Im going to keep on doing this. I have a long rd ahead of me.

 

Anyone with similar experiences willing to mentor me through the hard times? I need help.

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Hi Tammy , sorry you're having such a rough time.   

You can manipulate the withdrawal a little bit by doing smaller cuts.  Some people decrease by 5% at a time , every few weeks , and find it much easier than bigger cuts. (See thread on Micro-tapering)

You can also hold as long as you feel is right - you don't HAVE to go down every month.  Sometimes it's important to have a "tapering holiday" and let yourself catch up a bit.

 

What dose of seroquel are you on at the moment?   Perhaps you can update your sig.

I've just read over your thread and am concerned that you might have started tapering too soon after your hospital admission.

 

 

You're going to get through this , let me know if you'd like to talk on skype.

 

:)

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Here is this "revolutionary idea": why do what your doctor is telling you to do when this is so clearly causing you dreadful suffering?

 

This approach however requires that we educate ourselves and take responsibility for our wellbeing and stop being helpless guineapigs.

 

There's amazing amount of information in an easy to understand form here. There are mentors so cooperate with us. Altostrata here knows more about this process than most doctors. Very, very few of them know anything. That's why we had to come here.

 

But we need accurate information in order to be able to help. As Fresh suggested, update your signature for a start.

 

You can do it.

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