Lanah: Polydrugged: still on trazodone and seroquel

[lanah]

Europa do you have any other symptoms? 
It did not improve at all after one year? 

[Europa]

Oh jeez, I have quite a few other symptoms. My tardive dystonia presents in a much different way than yours. It's described in my intro post. But on top of that I have minor fluttering muscle spasms throughout my body and around my eyes. Energy levels are always sapped. I don't have tolerance to heat. My body gives me a really hard time on hot days. My diaphragm is affected so I have a hard time coughing and taking a deep breath through my stomach is difficult. Swallowing is much more difficult than it used to be. Feels like I have phlegm lodged in my throat that I can't swallow away.

 

Within the past year, I have committed quite a bit of time to bed resting so it's hard to say if my dystonic symptoms have improved or whether my muscles have just atrophied quite a bit so that the muscle contractions have weakened. My zoloft wd symptoms have improved a bit over the past year so it might feel a little bit of stress has been taken off my body from that. But I'll be honest with you my tearful prayers for my body to become normal again haven't stopped. It's still to this day very disturbing what my body is doing. I went to my second day of physical therapy yesterday and they seem pretty clueless about how to help me... And they are "specialists" with dystonia. This is not to say that yours will not improve. What would be most telling is what would happen over the next few months, maybe about 6 months or so. Bc that would typically differentiate if what you are experiencing is of the acute variety (the type that resolves itself) or the tardive (permanent) kind. My personal experience of watching my body get worse the more I tapered was terrifying. Which is why I can totally empathize with how you are feeling. I tried to tell myself that I am experiencing withdrawal symptoms that would go away. But it seemed more the reality that I was unveiling some damage that had been going on through the medication and the medication was no longer present in my body to mask it.

 

With that said I still hold on to some hope that this thing will go away based on those PubMed articles that you pointed to on 12 yr follow ups where people's symptoms at some point went away. But of course at best those odds are minimally comforting. Let's hope that you are experiencing acute wd symptoms that will resolve.

[Altostrata]

There is a specialist in withdrawal 80 km's further. It's in a big city and I'm a country person, plus with my agora phobia. I'm looking into if there is someone who wants to accompany me. (it sounds pathetic I know, but I'm so scared in big cities

 

Who is the specialist in withdrawal?

 

Are you able to talk to this person on the phone?

 

Was your neurologist able to see you?

[lanah]

Rather not say the name because it's the internet, but dr Healy recommended him. I did not go to neurologist because i'm going to that psychiatrist. 
I'm rather convinced that it's probably the trazodone withdrawal that is catching up with me. (after extensive reading) 
I need the stability. I'm a bit scared though, there are so few success stories on here so scared I will not heal. 

[Fresh]

Lanah , to me this sounds like you may have akathisia.

"Twitching, jerking. (all over my body. It's like I have epilepsy I don't know but when I move it's better."

 

That's why I kept walking when I had it - it seems to settle a bit with rhythmical movement.  It's just a sensation.

It isn't permanent , mine has completely gone.  Lots of other members have had it too and it's gone away.

 

That's a very sensible idea to have someone drive you or go with you to the doctors.  If you don't have someone

you know  perhaps a community centre or volunteer service ?

[Altostrata]

lanah, what did the doctor say about your symptoms?

[lanah]

He thinks it's EPS from the seroquel. i'm going slow, because it's very hard on me. I have a lot of electricity running through me, insomnia , nausea lately. Just going to keep it stable for a while. i'm on 15 mgs now. 

[lanah]

These are my symptoms right now:

INSOMNIA
DRYNESS
FASCICULATIONS
TWITCHES
TIGHT MUSCLES
TIGHT NEXT TO VERTEBRAE
NAUSEA
ANGER
ANXIETY
DEPRESSION
AKATHESIA
DIZZINESS
ELECTRICAL,VIBRATING FEELING
TIREDNESS
HEARTPALPS
AIR HUNGER
STOMACH ACHES
GASTRIC ACID
COORDINATION PROBLEMS
MEMORY
ATTENTION
BRAIN FOG
PROLAPSE FEELING
MUSCLE WEAKNESS
ADRENALINE FEELING
MOOD SWINGS
THROAT PAIN
EXCESS MUCUS
RAW AIRWAYS
BURNING SENSATION
EYE SIGHT PROBLEMS
TINNITUS
PELVIC FLOOR SPASMS
TEMPERATURE CHANGES
 

[Shep]

He thinks it's EPS from the seroquel. i'm going slow, because it's very hard on me. I have a lot of electricity running through me, insomnia , nausea lately. Just going to keep it stable for a while. i'm on 15 mgs now. 

 

Hi, Lanah. What is your doctor's prognosis for the EPS? Did he give you any information that can help guide you on the the rest of your taper? 

 

I also had a lot of electricity, insomnia, and nausea from Seroquel. It seems as sleep is restored, a lot of the other issues start to resolve. Are you able to do any non-drug methods that help with your sleep?

 

And thanks for your posts on my Intro thread. I hope you're feeling better soon. 

[lanah]

We decided to go slow. Either way I can't go faster. I had one night where I forgot my seroquel (I do not understand how that happened but yeah brain fog) And it was really horrible, no sleep, but the nausea and awful feelings I had , it made me remember my risperdal cold turkey. So the next day I noticed that I did not take it (i have a pill divider luckily ) 
So that's why I'm going super slow. I'm tapering 1mg at a time. And I want to see if i can stay stable a while. I will be seeing the doctor again in a month or so. Then we will see if the EPS calmed down (and so is brought on by the tapering) or not. I'm glad that this doctor understands. And he said the biggest problem is the young age I started those meds. 
Lately I'm so incredibly tired. I cannot get out of bed. I hope it will settle down soon. I know I had bouts like this before and it always makes me fear the worst but last time I got through it, so I'm trying to be patient. Sometimes you can have insomnia but still be functional, now I have nights that I sleep a bit, but I am extremely exhausted. Though I noticed that I sleep more when I go to bed later. Which is weird. But yeah everything is weird with this process. 

[Shep]

That sounds like a reasonable plan - 1 mg out of 15 mg is a 6.67% drop. 

 

As far as your young age being a factor, according to what we now know about the neuroplasticity of the brain, that either falls under the concept of being repairable or the brain is able to compensate. Either way, every single symptom you listed falls under "withdrawal" and you're going to see these symptoms diminish after you're off all the toxic meds. 

 

Have you checked out any of the non-drug methods for handling your symptoms - including sleep - on this section?

 

http://survivingantidepressants.org/index.php?/topic/604-important-topics-about-symptoms-including-sleep-problems/

[lanah]

This again. I had so much brain fog I could not figure out if I already took my seroquel last night or not. So when it was 3 am and I had severe akathesia I decided to take one. Now I'm supertired. I wonder if I took two by accident? I once forgot one dosage and it gave me a severe setback that was why  I took it. But I'm worrying now with what if i doubled and I will go through withdrawal again. urgh. So tired

[lanah]

This freakin akathesia is driving me crazy. What do I do? I sometimes really want to cold turkey it again. But if you see my record you see I always cold turkey I find tapering and patience the most hardest thing I have ever done. i don't know how ppl do this. 

[Shep]

This freakin akathesia is driving me crazy. What do I do? I sometimes really want to cold turkey it again. But if you see my record you see I always cold turkey I find tapering and patience the most hardest thing I have ever done. i don't know how ppl do this. 

 

Hi, lanah.

 

Cold turkey doesn't sound like a good idea.

 

Try to distract if you can. Akathisia is a rough symptom and I've had it in varying degrees over the years. If you can listen to calming music, perhaps take an epsom salt bath if you aren't sensitive to magnesium, find something to watch on TV or the internet, or play video games. 

 

It will pass in time. You've really come a long way and you're very, very close to being off all of your meds. And for may of us (myself included), that last drug at that really low dose is in many ways the hardest pill to swallow.

 

Focus on the fact that you're almost drug free and keep going forward. 

[lanah]

Thank you for your message, I need that sometimes. This personality trait is exactly why I cold turkeyed so many times before.
I was wondering last night that maybe tapering 0,5 mg instead of 1 mg would make it easier? I was planning a very long hold, but maybe I could manage a slower taper instead of 1 mg and long hold; What are your opinions about this? Do you think it would work or am I too kindled to taper at all :s Or isn't there such a thing?
I've started to gain weight (without eating more) it sucks because I eat very healthy.

[AliG]

Lanah.  A micro- taper could be a good idea at this stage. I notice it was mentioned earlier, but never acted upon. Stability is " key" and if you could get to that place and stay there for a good while , it might make all the difference in lessening some of your symptoms. Your nervous system has had a lot of stress , and could perhaps do with a hold , and then a micro - taper . Many here have had success , using this method and it could be something to think about. 

Micro-taper instead of 10% or 5% decreases

 

I think the weight gain will hopefully start to even out and drop , as your taper progresses further. Sometimes it takes a while for the body to regain it's homeostasis, and the endocrine system can be affected , like any other.

 

You might notice, in reading other member's threads that some of the most successful tapers have been very slow and steady .

 

What is your feeling about that ? Do you think that is perhaps something you could maintain? 

 

Ali

[Shep]

Lanah, Ali is giving you really good advice regarding doing a micro-taper to get off that last little bit.

 

I really think you'll benefit from the micro-taper and maybe feel a bit more like you have control over this. Regarding your comment on being kindled - the microtaper will be the gentlest way to ease off. Even more reason to try it. 

 

You may also be dealing with the psychological aspect of this being your last drug. That's one aspect I wrestled with as I came off of Seroquel. In my case, after being on drugs to sleep for 30 years, the "letting go" phase was very difficult. When you're put on these drugs young, you tend to "define" yourself by them. 

 

The way I did it was to build up as many coping skills as I could. So when those late night doubts and intrusive thoughts about "needing" the drugs or intrusive thoughts about the so-called mental illness that defined me for so many years crept in, I could simply reach into my toolbox of coping skills and distract until I was completely drug free and on the road to healing. Let those coping skills become habit. Distraction really is the best skill I've come up with that helped me finally break free from these drugs. 

 

You're in the final hurdle now and we're all pulling for you. You can do this. 

[lanah]

There is 1 thing holding me back from the microtaper: it's that I would need to make a liquid and calculate stuff. I'm in no way capable of doing that right now, the pills I'm getting are compouned and prescribed by my doctor. He can prescribe 0.5 mg less I think but a micro taper would be on me. And yeah I do not have the mental capacity right now to do such a thing, what if I mess up?

So a long hold before microtapering sounds good. So I should do my long hold anyway. Just, I'm so scared of microtapering, even though I KNOW, i KNOW that it would be probably better. It's just, so scary. I will wait until I have hold a while and then I will reconsider the microtaper. 

[Hopefull]

Hi lanah,

Why don't you hold your current dose for at least 5 months, before cutting down again?

Listen to your body. Sometimes it is really good to take a break from tappering.

Let your nervous system calm down and when you are ready, start the process again.

You are doing pretty well so far.

Don't loose hope, keep going, you are almost there!

[lanah]

seems like a good plan! Having some sx again that i didn't have for 5 months now. So that's depressing.

[lanah]

So the twitching and spasms got much worse in my face. It is very scary and I'm not convinced that it isn't tardive dyskinesia at this point. I've been on 15 mgs for 3 months now. So no other changes. And I was planning to hold until august. My appointment is middle of june. I don't know what to do. I could try and call the psychiatrist tomorrow. But I don't know if they can even know if it's TD or withdrawal.
What do you guys think?

[lanah]

I have to add that I had this type of pelvic floor spasms lately that I didn't have in a long time and that started to subside now, but now the twitching is worse than ever. Never had it in this degree.

[Shep]

So the twitching and spasms got much worse in my face. It is very scary and I'm not convinced that it isn't tardive dyskinesia at this point. I've been on 15 mgs for 3 months now. So no other changes. And I was planning to hold until august. My appointment is middle of june. I don't know what to do. I could try and call the psychiatrist tomorrow. But I don't know if they can even know if it's TD or withdrawal.

What do you guys think?

 

lanah, how much are you sleeping now? I've read through your thread, and insomnia is a main symptom for you. So I'm wondering if this may be related to sleep deprivation, which can cause tremors and twitching, as well as a lot of other problems. 

 

Are you sleeping at night? Also, are you using any supplements or OTC meds to help with the insomnia? 

[lanah]

No, I started sleeping again a few weeks back. So I was happy , but a lot of sx emerged. If I go to bed at 12pm instead of 10 pm then I can even sleep through the night. I was looking forward to going on holiday this summer for the first time in forever, because of my plan to hold until after, but now I'm doubting everything again.

[lanah]

My teeth touch at weird moments, it freaks me out

[lanah]

Should I first see if it goes away if I can manage to calm down somehow? (had a lot of stress lately because of my husband)  ? Should I call the Pdoc? Should I continue tapering?

[Shep]

It could very well be stress related. Are you using any supplements or OTC meds for sleep or are you sleeping on your own now? 

[lanah]

I don't use other stuff, only the seroquel 15mgs. I'm trying to stay away from everything, even supplements at this point.

[Shep]

That's great news, lanah. Staying away from everything is really the best way to go if you can. 

 

I saw where you posted on the Tips for Tapering off Seroquel about a liquid taper. I think that is a good way going forward, but I am concerned about you making a reduction when you just had an uptick of symptoms. That may make it worse.

 

I've asked the other mods to weigh in on your tardive dyskensia question. Your comment on stress may be key here. Stress can cause a lot of symptoms. 

 

Hope you're feeling better soon. Again, it's a really good sign that you're sleeping well. 

[lanah]

Yes, that's true. I was relatively stressfree before, just the withdrawal (I mean in my life) Now there has been some situational stress, so it's difficult to deal with it as I was very focused on just the withdrawal. I will wait until I have more clues as to what I should do, but I want to prepare myself for a microtaper anyway, as I stated before, this will be very difficult for me. So the more preparation time I have the better.

[Marsha]

So the twitching and spasms got much worse in my face. It is very scary and I'm not convinced that it isn't tardive dyskinesia at this point. I've been on 15 mgs for 3 months now. So no other changes. And I was planning to hold until august. My appointment is middle of june. I don't know what to do. I could try and call the psychiatrist tomorrow. But I don't know if they can even know if it's TD or withdrawal.

What do you guys think?

lanah, did you ever see the neurologist that Dr Healey recommended and Altostrata also asked if you had seen this doctor? Altostrata mentioned me in an earlier post. I was experiencing involuntary movements in the form of face twitching, jaw movement and clenching, finger twitching, and my right leg dragging. I was advised by three doctors including a very experienced and well known doctor to go into hospital for rapid withdrawal of geodon also an antipsychotic that I had been taking for 12 years. I took a chance and did it at home with the support of my husband. It was a grueling withdrawal but my TD resolved. TD is not to be ignored. If you have it please get evaluated by the neurologist and go from there. I made the choice to stop the geodon. It was the right choice for me although I suffered greatly from withdrawal symptoms. This is just my experience. You must decide for yourself what is best for you. I would just encourage you to get evaluated by a TD specialist.

[Petunia]

Hi lanah,

I've gone through several periods of tremors and twitching as part of withdrawal even though I never took an antipsychotic. Many people report experiencing these particular symptoms after the NS has become destabilized from withdrawal and fast tapering. A period of increased stress can cause a wave of new symptoms or increased symptoms.

 

The patterns of recovery can effect every part of our body and seem to occur in cycles. You are on a low dose of one drug now and doing very well.

 

I would be very surprised if 15mg of seroquel was causing TD

 

If I were you, I would hold where you are for a while and give it more time. Do your best to relax, reduce stress and focus on self care.

 

Have you seen these videos?

 

 

[lanah]

 

So the twitching and spasms got much worse in my face. It is very scary and I'm not convinced that it isn't tardive dyskinesia at this point. I've been on 15 mgs for 3 months now. So no other changes. And I was planning to hold until august. My appointment is middle of june. I don't know what to do. I could try and call the psychiatrist tomorrow. But I don't know if they can even know if it's TD or withdrawal.

What do you guys think?

lanah, did you ever see the neurologist that Dr Healey recommended and Altostrata also asked if you had seen this doctor? Altostrata mentioned me in an earlier post. I was experiencing involuntary movements in the form of face twitching, jaw movement and clenching, finger twitching, and my right leg dragging. I was advised by three doctors including a very experienced and well known doctor to go into hospital for rapid withdrawal of geodon also an antipsychotic that I had been taking for 12 years. I took a chance and did it at home with the support of my husband. It was a grueling withdrawal but my TD resolved. TD is not to be ignored. If you have it please get evaluated by the neurologist and go from there. I made the choice to stop the geodon. It was the right choice for me although I suffered greatly from withdrawal symptoms. This is just my experience. You must decide for yourself what is best for you. I would just encourage you to get evaluated by a TD specialist.

 

I did; Back then he didn't think it was TD , but more withdrawal on top of withdrawal. (because of it being more in my body and only the eye twitches) But now it's my jaws too, so he should reevaluate I guess.

I did get some sx back last week that were solved for a long time which could indicate a wave from benzo's/trazodone. But it's so hard to tell. I will call him today, when I'm alone. (too much ppl here for the moment) Maybe he will give me an appointment earlier. But you think I can trust him? I mean I'm just really paranoid because of what happened to me. He did say he had experience with TD. I'm just really anti doctor this past year.

[lanah]

Damn. He's on holiday, so I can't get an appointment earlier.
It's my teeth that hit each other randomnly, sometimes while talking, sometimes whil eating, sometimes just like that.
I just remember that because of the situational stress I ate junk food. (french fries and hotdogs) Today there was a lot of stress again, but we kind of sorted
our problem out so , I hope that the next days I can relax and hopefully this will pass. If not I will probably have to start tapering again. I really hope not,  I was so looking
forward to our trip abroad.

[Marsha]

In his book Psychiatric Drug Withdrawal on page 46 table 4-2 General characteristics of Tardive Dyskinesia Dr. Peter Breggin writes: "No two TD cases look alike. Suspect any unusual movement. TD can begin with any muscle that's partially under voluntary control and can occur in one muscle group or several, with varying muscles afflicted at different times. TD waxes and wanes and varies from moment to moment and day to day. TD worsens with physical illness, anxiety, stress, and fatigue, and can improve with rest and relaxation." On page 47 paragraph 2 he states "Anxiety, stress,and fatigue can worsen tardive Dyskinesia, leading healthcare professionals or family into the mistaken belief that the patients movement disorder is psychologically based." Tardive Dyskinesia is an eps. On pages 44-45, "The rates and prevalence for TD are very high; but unfortunately, clinicians too often fail to identify the disorder (Brown & Funk, 1986; Weiden, Mann, Haas, Manson, & Frances, 1987.) It is important for the clinician to inform and educate the patient and family about the disorder; to monitor for any signs of TD, including an examination of the tongue; and to withdraw the patient if at all possible at the earliest sign of abnormal movements. Write down all of your symptoms past and present and if you are not satisfied with your current neurologist, seek out a second or even third opinion. If you can get a copy of Dr Breggin's book take it with you to your appointment with notations in the TD section. My TD has mostly resolved except for lingering jaw movement. Because I was rapidly tapered off trazodone also and then stopping the geodon, I have endured severe emotional and physical withdrawal symptoms but in my case, I didn't have akathisia. YET. If it develops then I will also have to endure it. I am sorry lanah , I wish there were easy answers forthose of us.polydrugged long term. I am on my next leg of my journey off psychiatric drugs. benzodiazepines. I am also fearful, but I am trying to distract myself shep has helped me to do this. And mammaP, and many others. I share with you my experience and anything else I am capable of. Be assertive with your neurologist. I hope this helps.h

[lanah]

Damn. that is so scary. When I contacted my pdoc they also told me to write down my sx. If I would have TD, then what do I do? I mean, Do I taper like from 15 to 12 to 10. Or do I make smaller cuts faster, or bigger cuts. Even small cuts really make me very unstable. I mean, do I "detox" or do I taper fast? I have a very helpful acupuncturist. But he can also only do so much, I guess.
I wondered for a long time if a bigger cut would be equally as hard as smaller cuts because of the instability of my CNS. I'm fearful how I will feel if I fast taper. Because I feel ok-ish right now because of the sleep I'm getting.