Hello im jojo ..my story so far..

[jojo49]

Hi everyone im jo but my friends call me jojo.id like to share my story so far and am eager for much help and advice. will try very hard not to make this too long lol but these stories are never short,right?

 

My dad died suddenly 2004 and I was struggling with my grief my mothers grief and trying to work and bring up my children got depressed and after trying several ad's with not much success because they made me feel unwell ended up on trazodone 150mg this kept me awake so was given Phenergan 25mg that worked.

 

want to just add at this stage many years ago after I had my daughter I got deoressed was put on lofeperamine and was on it two years no real problems and tapered off in 6 weeks no problem! when they tried me on it again before the other ad's and the trazodone it made me really poorly severe heart palpitations so couldn't take it any more .Was on trzodone just over two years and too be honest its never really been a friend never felt brill on it but just went along with it as was fed up of trying different things.

 

i started to notice things I didn't like ,ie, always tired felt flat brain fog spaced out hungover and thought don't like this lts get off it now.old gp started reduction and I got to 50mgs and then went 50mg every other day then got terrible withdrawal but I didn't know what it was neither did doctor,if it wasn't in his BOOK and he didn't do it in his training it didn't exsist lol!!!!I assumed depression was coming back and went back up to 150mg!!

 

changed doctors changed consultants and really started this journey January 2012 with better support and more knowledge.new gp tried a faster taper then I jumped off at 50mg and had disabling with drawals so went back to 150mg.

 

jan 2012 new consultant brilliant lady only temporary cover for maternity leave more's the pity.she agreed it was the devil drug and to get off it she felt as we got lower down the dose we may need to cross taper which I didn't really want to do but we would wait and see.

 

tapering covered in my signature but it roughly went 150mg 100mg all trazodone and reducing Phenergan slowly alongside it,75mg,50mg,35mg???established a pattern every three months or so drop the dose go a week no change then around 10 days of unpleasant but tolerable withdrawal than on about day 10 things subsided and life got back on a more even keel,although have never ever felt 100 percent on trazodone.so I had a pattern I could work with then it all went a bit wrong!!

 

back in septemper 2012 tried swapping from 50mg of trazodone capsule to 50mg of liquid trazodone,didnt go well felt really poorly brain zaps shivers crying anxiety etc laste 2 days and gave up went back to capsule felt much better in two days.so had to fend another way to reduce tried dissolving a 50mg capsule in warm/hot water so it would dissolve quicker as I shook it in a water sample tube. then we put it in a medicine cup and drew off 15mg leaving us with 35mg and I took that at bedtime.

 

realised after say 7 weeks I wasn't feeling right but couldn't put my finger on it things were slipping a bit and I was feeling vunerable.then I went into a full blown withdrawal type period. panicked it was a saterday coulnt get hold of anyone so spoke to a very very helpful local pharmacist. told him what we had being doing and he said the water was to hot and had destroyed the active ingredient in the trazodone.

 

he suggested two other things undo capsule make reduction and take it on a sppon with jam found that a bit harsh like the tablets ive only ever really been able to tolerate trazodone in the capsule form for some reason although on paper they are supposed to be the same but we all know they are not.other suggestion was undo capsule spilt powder and put back in capsule this seemed to be the safer more sensible idea so we did this for 3 days ,problem was,as I know from joseph glemullens wonderful book was that I was already in a withdrawal so neede to reinstate the last doe I was stble on.so reluctantly went back to 50mg capsule.

 

after 48 hours most of the withdrawals had subsided.but did feel drowsy for a few days .theni had crying spells anxiety for a few days my gp said because we didn't know what I was exactly injesting on the liquid method reinstating 50mg was almost like starting it again for first time????? so take s up to a month to get back in system as a therapeutic dose ??and in the early days increased anxiety and crying spells were common. I went with it for a week or so ans it did subside. not felt totally right back on 50mg though and from Thursday onwards I have felt high anxiety crying spells fear etc etc. feels like im back in some kind of withdrawal???hard to know but I fell that's what it is.

 

plus since end of January my tinnitus has gone through the roof.so I know I need to stabilise before I make any further drops and will include this in another topic if that's how we do it here,but my dilemma now is do I go with this a bit longer to see if I even out or do I make another increase to 75mg to see if that helps even things out before I begin a much slower taper as suggested here at 10 % per month .I feel terrible and don't know where to turn feel totally tearful and don't know what to do for the best. would love your help and support please. jojo

Edited May 6, 2013 by Altostrata
added line breaks for readibility

[jojo49]

Hi Im Jo my friends call me jojo have just posted my introduction and story in the introduction topic and am now just putting my recent problem and dilemma here so hoping you can help me.

 

from jan 2012 I had established a pattern of tapering drop dose ok a week then unpleasant withdrwal but tolerable for 10 days then things subsided and life got back on a more even keel,although have never ever felt 100 percent on trazodone.so I had a pattern I could work with then it all went a bit wrong!!back in septemper 2012 tried swapping from 50mg of trazodone capsule to 50mg of liquid trazodone,didnt go well felt really poorly brain zaps shivers crying anxiety etc laste 2 days and gave up went back to capsule felt much better in two days.so had to fend another way to reduce tried dissolving a 50mg capsule in warm/hot water so it would dissolve quicker as I shook it in a water sample tube. then we put it in a medicine cup and drew off 15mg leaving us with 35mg and I took that at bedtime. realised after say 7 weeks I wasn't feeling right but couldn't put my finger on it things were slipping a bit and I was feeling vunerable.then I went into a full blown withdrawal type period. panicked it was a saterday coulnt get hold of anyone so spoke to a very very helpful local pharmacist. told him what we had being doing and he said the water was to hot and had destroyed the active ingredient in the trazodone. he suggested two other things undo capsule make reduction and take it on a sppon with jam found that a bit harsh like the tablets ive only ever really been able to tolerate trazodone in the capsule form for some reason although on paper they are supposed to be the same but we all know they are not.other suggestion was undo capsule spilt powder and put back in capsule this seemed to be the safer more sensible idea so we did this for 3 days ,problem was,as I know from joseph glemullens wonderful book was that I was already in a withdrawal so neede to reinstate the last doe I was stble on.so reluctantly went back to 50mg capsule. after 48 hours most of the withdrawals had subsided.but did feel drowsy for a few days .theni had crying spells anxiety for a few days my gp said because we didn't know what I was exactly injesting on the liquid method reinstating 50mg was almost like starting it again for first time????? so take s up to a month to get back in system as a therapeutic dose ??and in the early days increased anxiety and crying spells were common. I went with it for a week or so ans it did subside. not felt totally right back on 50mg though and from Thursday onwards I have felt high anxiety crying spells fear etc etc. feels like im back in some kind of withdrawal???hard to know but I fell that's what it is. plus since end of January my tinnitus has gone through the roof.so I know I need to stabilise before I make any further drops and will include this in another topic if that's how we do it here,but my dilemma now is do I go with this a bit longer to see if I even out or do I make another increase to 75mg to see if that helps even things out before I begin a much slower taper as suggested here at 10 % per month .I feel terrible and don't know where to turn feel totally tearful and don't know what to do for the best. would love your help and support please. jojo :)ps thinks timings are wrong on my post I am in uk and its now 3.50 pm in the afternoon??? ps in the past when I have reinstated to a higher dose than im on now it has worked that's why ,although I don't really want to go up above 50mgs in the past it has evened things out a bit.so not sure the best way to go now .

[Altostrata]

Welcome, jojo.

 

I'm sorry you're having such a bad time with trazodone.

 

You've gone up and down several times, it's possible you've become sensitized to trazodone and may be taking too much. It's very difficult to tell whether you're having adverse effects from too much or withdrawal symptoms.

 

If at first in your last reinstatement you felt better then after a while felt worse, that suggests you're getting adverse effects, such as high anxiety.

 

I suggest you think in terms of much smaller increases (to reinstate) and decreases (to taper). You might try decreasing by perhaps 5mg to see if the symptoms are reduced. If so, it means you've been taking too much trazodone.

 

Here's a topic that describes how to titrate trazodone: http://survivingantidepressants.org/index.php?/topic/2883-tips-for-tapering-off-trazodone-desyrel/

 

I merged your 2nd post here. You don't need to ask for advice in the Tapering forum, you can put your questions in this Intro topic, which is like your personal journal.

 

(It is essential that you add two returns after every paragraph. Those long blocks of text are difficult to read.)

[jojo49]

Hi Altostrata,

 

thanks so much for your rapid reply its been such a horrible time and the doctors and psychitrists seem to be scratching their heads and not really quite knowing what I should do.

 

It seems to me that on this forum you have so much more knowledge and information and personal experience with it all and im so greatful for that.

 

it certainly hadn't occurred to me that I could be over sensitized to trazodone and so possibly taking too much. thank you for that. As you say ,it is very difficult to know if im taking too much or still in a form of withdrawal.

 

thanks for your support jojo

[jojo49]

Its just gone midnight hubby gone to bed and here I am alone with my thoughts,:how did I get here how did it all become such a mess how can I make it better will I ever get off trazodone.night time is a horrible place I feel so alone and just want to cry and cry hope this gets better.

 

would really value some more words of support right now. im in such a dark place and am finding it sooo hard to be positive or see any light at the end of the tunnel ( jojo.

[tezza]

Hi jojo,

 

I've been there, it's very lonely but you will get better. It takes time and no one knows how long it's going to take for each person. It seems like it will be that way forever when you're in the middle of it.

 

I'm sorry you're having it so rough right now. You are not alone, there's always someone here, well, just about always.

 

Withdrawal insomnia is the pits.

 

Welcome to the forum, I'm sorry you had to find us.

[jojo49]

Hi Tezza

 

thank you for your kind words I do appreciate them so much.

 

jojo

[Angel7366]

Hi Jojo. I am in the UK and I can't sleep either. If you read my Angel thread a bit lower down you will see I am in big trouble with my dosage too and am dropping a dose as Akro suggested as it is having an adverse effect like yours may be.

 

I took my first drop tonight. i can't sleep at all I don't know if this is the result of a dropped dosage (as am not used to doing the liquid, just mixed it with water) or because of the stress.

 

In any case I just wanted to say I am with you totally and know what you are going through. It's difficult and we need to be patient but I think when we stabilise on the right dose we will feel better.

 

Angel xx

[Angel7366]

So sorry am typing on my iPhone and make loads of typos. I spelt Alto's name wrong. Sorry!

[jojo49]

hi angel

 

so sorry you are having a horrible time of it I read your thread its so horrid. for me its about making the right descisions and sticking with them. just waiting for my doctor to call to see me. just sat here crying and crying so don't know whether to try dropping my dose or to up the dose. just want to stabilize somehow so I can continue with a slower taper husband happy to undo capsules and divide powder with a cutting blade then put back in the capsule.such a pain that the liquid makes me feel unwell. jojo

[flower]

JoJo.I too have trouble with Trazadone. I was on 100mgs and now take 75 to sleep. I will never make such a huge drop again. Right now I wait because of the other taper of celexa. I cried alot and got very anxious..Thinking of tapering that drug is on my mind alot. I have no idea how I will do it but my Doc and I discussed the powder form so I can drop a little at a time. She knows how sensitive I am. We have time on our side. Take this very slow...Coming here will be a good thing.

[Rhiannon]

Just want to add that after all the dosage changes you've been through, attempts to quit, big cuts and then big reinstatements, and the every-other-day thing (guaranteed to cause problems)--All that bouncing around seems to destabilize the nervous system, so it's not surprising to me that you're feeling so terrible and symptomatic. That's what always used to happen to me when I made the drastic changes (I was always trying to quit meds but would get so sick I would go back on them).

 

So as Alto says, if you're going to make any further decreases or increases, go with smaller amounts, smaller changes. And then STAY at the SAME dose for a while.

 

I just think that destabilization may be part or most of what's going on with you right now and if you can give everything time to settle down, then you can do a more reasonable slow and careful taper which will hopefully work better for you.

[jojo49]

thankyou all of you for your advice and support its so very valuable.hope things improve for you flower I really do

rhi your story is an inspiration and have read it many times in the last week. I will stabilize again and be nice to myself whilst im waiting. then when ive been stable for a good while I will continue with a much slower taper.Any ideas as to how long I should be stable before I start trying to taper again ?? this life is horrid right now so hard to be positive jojo

[Angel7366]

Hi Jojo

 

As you have read my thread, you will have seen that I reinstated after my C/T at a higher dose than Alto and others recommended. I have been desperately praying for stabilisation but although I saw a bit of improvement at the beginning, I was getting steadily worse.

 

Alto told me that my CNS was sensitised and possibly the 7.5mg was having an adverse effect. I always felt it was high as when I took it I felt a strong "hit" then the palpitations and burning etc. which have been troubling me recently would start and I honestly have hardly any relief for a whole month.

 

I only reduced my dosage to 6.5mg last night but I can honestly say that, although today is not perfect and I actually had a totally sleepless night last night, I am having less bad symptoms and it is the best day I have had in a month and I am more hopeful. I have had a wave or two or three today but they have passed. A different pattern seems to be setting now and I am hopeful it is a normal pattern of stabilisation. I may be wrong as I have only taken one dose and Alto says that it takes 4 days to get into the bloodstream. But I can already feel that the drop is beneficial to me although it is early days and I will probably continue to do more than my share of moaning. I am almost certain that I would not have stabilised on the higher dose.

 

Don't panic over this. Once you are stabilised on the right dose, you will be stronger to face whatever lies ahead. You are not alone in this.

 

Hang in there!

 

Best wishes

Angel

[jojo49]

thanks so much angel that is really helpful jojo

[strawberry17]

Welcome to the forums Jojo, I'm also in the UK. Hopefully being here will help you feel better.

[jojo49]

hi everyone,

was almost too afraid to come on here today with an update but I know that's silly.my doctor came to see me yesterday as I was in a complete meltdown. I showed her what was said here and she said its absolutely a possibility that im sensitised to trazodone,she is a nice gp!because im soo poorly at the mo she was worried for me to drop the dose any just to see,maybe a couple of weeks ago when I wasn't so weak may have been ok to try. she put me back up to 75mg to try and get me a bit more stable.

 

im so scared at the moment and have no idea what to do as im so weak and so tired husband thinks I need to try going up and then when stronger start coming down by the 10 % rule. im totally torn im scared ive made the wrong descision going up to 75mg but so poorly at mo cant think for myself. I know ive come here for advice and I value it and I so wanted to do what alto said and drop by 5mg to see if that eased any symptoms but I feel so ill and so scared just didn't know what to do. for the record my consultant phychiatrist phoned me yesterday and she thought I should stick out on the 50 for a while longer. not felt this ill in two years. scared and have no idea what to do.

[jojo49]

hi strawberry

[Altostrata]

You might try decreasing by perhaps 5mg to see if the symptoms are reduced. If so, it means you've been taking too much trazodone.

[jojo49]

thanks alto will try this when I feel a bit stronger I am

keen to try this and take advice

[jojo49]

hi everyone. two days ago my gp came to see me and suggested going back up to 75mg and for two nights I did but ive really struggled as in I didn't really want to and I wanted to try alto's helpful suggestion of dropping by 5 mg to 45mg and see if that eases the symptoms any ,and if so then I have become sensitized to the trazodone.

 

doctor came out today and I told her that I wasn't happy to go up the dose before id tried a small reduction in the dose because what alto and rhi says makes a lot of sense. she is a great gp and is very open to learning even though this isn't something she knows about.

 

she said that it was obviously bothering me that id gone up the dose before trying the small reduction as suggested so to drop the dose by 5mg as suggested here and see how that goes.

 

either way its scary but I feel I had to try what alto suggested first.

 

thanks for all the help and advice. the unknown is a scary place and im grateful for all your support and advice,when I understand whats happening to me even if its not so good I don't get anxious but when I don't know whats happening with me or why its soo scary. jojo.

[jojo49]

Would love some words of support im in a scary place right now.so glad i found this site.jojo.

[Angel7366]

I'm in the same scary place with you Jojo. Good luck with the drop

 

Angel xxx

[jojo49]

Thanks angel i also hope things improve for you soon. Jojo

[jojo49]

Hi everyone dropped to 45mg last night lots of dreams was brighter when first awake but been very drowsy this after noon.have having no function tinnitus raging .alto how long before i may see any improvement if it is a sensitivity problem.?

 

Feel so rubbish have not being able to function at all.first time in 2 years i ado this ill.can't help thinking the course of penicillin i had too take two weeks ago for an ear infection hasn't helped any. ((

 

JoJo

[jojo49]

Phone typo's meant to say not been this ill for two years.hate having no function at all.noticed tinnitus creeping up last December. JoJo

[jojo49]

hi dropped to 45mg as suggested two nights ago how long before I may know if im sensitized to the trazodone??

 

jojo

[jojo49]

Please help me with a reply i know you are all busy people but im freaking out a bit at the moment.jojo

[Altostrata]

It takes about 4 days for a dosage change to fully register.

 

Yes, your ear infection and penicillin could contribute to tinnitus.

 

Keep notes on paper of your symptom pattern to see if it is related to the dosage change.

[jojo49]

thanks alto so will it be around 4 days before I see any improvements if I am sensitized to the trazodne,sorry for the repetition but its hard to register stuff sometimes. thanks for all your valuable help and support

 

jojo

 

ps have also just made a donation to this very worthy site

[Altostrata]

Yes, give it time.

 

Thanks for your support!

[jojo49]

Your welcome.i have another question, in the past when ever I've had to do an up dose my head has felt a bit swimmy and strange on and off for a day or two.when ever I've made a reduction its not ever done that.I've noticed yesterday and today on and off the swimmy feeling in my head and wondered if you why this is happening.

 

.I've made the 5mg reduction as suggested.to get any reduction from fifty with my capsule we undo capsule make the reduction and my husband is getting it far more accurate than ever i could he is a star.

 

The pharmacist we spoke to said because the powder in the capsule has

To be an even mix right through,that it is safe to reduce using this method.

 

Just a little worried of a different pattern from what im used to with a reduction and wondered if its normal to get the swimmy head thing going down the dose even though I've never experienced it before.the anxiety has lessened today.

 

Tonight is i believe the 3r d night we have reduced by 5mg .

Jojo

[jojo49]

Ps when the reduction has been made we scrape the powder back into the capsule.

Jojo

[strawberry17]

Jojo I always got the swimmy feeling in my head as well, you turn your head and it feels like it takes a few seconds for your eyeballs to catch up, horrible, I generally found it did go away after a few days. You have a great husband.

[jojo49]

Hi strawberry

 

Not totally sure how head feels hard to describe swimmy was best i could do but not quite sure thanks it.sometimes feels weird on top of head them sometimes feels a bit strange at back of head on and off.never known it on a reduction?? And yes my husband is a great support.

 

 

 

Jojo

[jojo49]

Hello all,

Been on the 45mg 6 days now.on and off have felt a little better but no where near right.husband back at work today and have woken up feeling a little shakey and just a bit scared.but Dont know why.never ever been like this.is this normal if you have become destabilized and will it pass.

 

I Dont like the feeling of being scared and not feeling quite right.

 

Please help.

Jojo