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Kiki2015: tapering Abilify

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kiki2015

 Dear all, I am currently coming off abilify, I am on 3ml of abilify liquid titration.
2007 August- voluntary patient in a private clinic abroad- fro 3 months- turning point for me for the better- prescribed abilify..and lorazepam...took abilify for 7 years but not the benzo as luckily, when I returned my GP took them away from me saying they were highly addictive.... After returning to university and graduating .. It was then I decided to face events from the past and ask questions.. which were never answered at the time. In 2013 I decided to come off them, a withdrawal plan was set up and my brain went like a yoyo- after taking 15 mg for 6 years.. psychiatrist prescribed 15 for a month, 10 alternating days, 10-5 mg for another few months alternating days... my delicate CNS was in so much pain.. I stopped at 5 mg in 2014 around June..but I went from 10to 5mg big drop..  smiley.gif..from September 2014 to January- the most horrible pain ever.. January 2015- now 2.5mg also half. It was when I went on holiday in spain after going to A&E that in september 2014 after not being able to cope for months with these headaches..that I was told not to decrease so rapidly, or on alternate days, or more than 15%- news to me. rolleyes.gif..In august 2015 decided to go back to 5mg- I had to make the decision to increase the meds and face pain and improve memory than have more memory loss and also pain...I will get there but don't know how long it will take..hoping..can someone please advise.. all I seem to be getting is guesswork
 smiley.gifsmiley.gif

Edited by scallywag
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Petunia

Welcome Kiki2015

I moved your post to an Introduction thread of its own. This way more people will notice it, and you can maintain your own intro/update thread. Here you can track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want. Its a good idea to bookmark it or follow it, so its easy to find again.

 

It sounds like you were tapering too fast, but now you understand that it has to be much slower, so that's a good thing.

 

You will find some good information here:  Tips for tapering off aripiprazole (Abilify)

 

How are you feeling at the moment?

 

It would be great if you would put your drug and withdrawal history in your signature. Doing this helps people understand your context, it appears below each of your posts. Here are instructions for how to do it:

 

http://survivinganti...your-signature/

 

Petunia.

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kiki2015

I am writing now and even as I write it takes me ages to think about things. My short term memory is practically non existent, I can only remember the same things over and over again- I wouldn't tell a psychiatrist, he/she would just diagnose me with OCD and completely ignore the fact that it is the drugs.

 

My neck twists to one side, mine is a  case of massive medical negligence, but I wouldn't have the money to sue. Recently we have been allowed to view medical notes through a system organised by the government. I was prescribed antipsychotics from the age of 18, I am 32. I witnessed the worst aspects of the mental health NHS system when I was sectioned. I believe the attitude of psychiatrist towards people who have been diagnosed with psychosis is appalling and some people have even called it a holocaust, I can see the likeliness.

 

I have been silenced so many times with antipsychotics, and now that I want to come off them I am so alone. My memory is appalling, I have been diagnosed with impaired cognitive abilities- I know this is due to the drugs. I would like to know if anyone else feels the same way. We patients who have been harmed have a mountain to climb if anything is to be done to change things just for ourselves. I am fed up of the medical profession, I developed parkinsonism in 2007.

 

My psychiatric medical notes are flawed completely, there are things which were added falsely which has further influenced my negative treatment. Anyway does anyone know what I can do to help myself or where I can go to get help. I just can't live like this anymore. How long will this last, and will it be forever?

Edited by KarenB
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KarenB

Hi Kiki,

 

I moved your post into your original Introduction thread, as it's one intro thread per member.  Any time you want to post, just click 'reply' on this thread. 

 

I'm sorry things are still so difficult for you.  It's very unfair, but for some of us withdrawal seems to just take longer - especially when a person has been medicated for many years.  It won't last forever, but good healing takes time.  Are you doing anything like taking magnesium and fish oil?  Guided meditations?  There are many suggestions in our Symptoms and Self-Care Forum which can help you to cope better.

 

Are you still taking Abilify?  If you could write a signature with all your drugs/doses/tapering methods that would really help us to help you more accurately.  Thanks.

 

Karen

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Fresh

Hi kiki , welcome to the site.

We'd like to be able to help you , but you need to help us to do that.

 

You said you reinstated 5mg of abilify in August 2015 . . . are you still taking that dose?

Please fill in your signature with dates and dosages of how you tapered.  

Instructions are here  http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

Please click FOLLOW at the top right , so you receive an email each time someone posts.

 

bw ,  Fresh

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kiki2015

Hi all, I have had some terrible problems, with my GP. She has been so negligent it is unbelievable. She has been making so many false promises and if I go back to her with the same problem she becomes worse. Although she referred me to a psychiatrist in November 2015, I did not get an appointment until March 2016 and then again in August 2016. Within the space of two years of withdrawal, I have suffered so much all on my own. My GP has just sat there shaking her head not doing absolutely anything. I started withdrawal in 2013-September. Within these 3 years I have been through a worse situation that when I was in hospital in 2006, I have been screaming, shouting with pain.

 

My GP has breached many policies with are part of the surgery. Within these 3 years I have gone downhill majorly, due to the severe memory loss and negligence by my GP who is refusing to help me and is altruistic enough to say about the last psychiatrist I was referred to : 'oh, he's a nice guy, he'll listen to you.' I  am entitles under the guidelines to haver someone in the room with me in an appointment. When my mother asks almost begging the doctors to keep her alive and well so she can look after me, she merely shrugs her shoulders and doesn't care. Yet she will not disclose any information to me or my mother about either. My mother is entitled to know about me and  I let that happen. My GP has also arranged for me to have social housing, without informing me or asking me before hand. How can she take it upon herself to do this? what kind of an individual is she? She thinks my parents are stupid and the same with me. She does not let me be involved in my own care, she has stonewalled me.

 

I don't trust her anymore. The more I go back to her the worse she treats me. She recently called me up and said: ' oh, have you ever thought of harming someone, she said it so matter of factly . I was shocked. I don't know what she would do. Everytime the patient doctor relationship has been breached, She has been justifying her meagre actions by writing that she has done something when in fact she has not. I wrote a complaint to NHS England, I wrote to the GMC, I wrote to the NMC, I got the same reply- that my GP had been professional and done the right thing. I have been begging her for help and she has been ignoring me. I think she is turning nasty. This is abuse.

 

I saw another GP at the surgery, a junior doctor, - soon he was making arrangements for me to have a syphilis test. I looked at my records and was shocked, he did not tell me this and this did not show up in blood tests. this is wrong on many levels. I would like to name and shame my surgery. Apparenly everyone say it is wonderful but they do not give me any wonderful treatment, I have almost been marginalised. from the help I need which is why it has been ongoing. When I told the psychiatrist this year in August this was happening, he said ' oh, you have very strong opinions.'  I thought this was the biggest form of hypocrisy ever. It seems I am not allowed to even defend myself from the abuse and negligence.

 

What can I do ? I want to give the name of the surgery. The parliamentary ombudsman I have heard is useless.

Edited by scallywag
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kiki2015

I could say more but I don't have any energy left. This is negligence on every level.

Edited by scallywag
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kiki2015

Abusive doctors : continued. GP never takes into consideration my feelings.

Edited by scallywag
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kiki2015

or the time I have lost or how it has affected me.

Edited by scallywag
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scallywag

Kiki I'm sorry that you are having such awful problems with your doctor and the surgery.  I've moved your posts to your introduction topic because it isn't an announcement.  Just a reminder that the purpose of Surviving Antidepressants is to assist people with their concerns about coming off psychiatric medications.

 

Someone from the UK may have some suggestions for you.  You could post in one of the UK threads in the Relationships forum. Although the members aren't in London, they may be familiar with complaint processes in the UK.

 

Colchester & Essex (UK)

Southwest UK

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kiki2015

Dear all,
 
It has taken me 4 years to withdraw from antipsychotics, I started in 2013, September. I had been taking antipsychotics since the age of 18 so I have had them in total for 14 years. I have been marginalised by the treatment from my GP who has pushed me to the back of treatment. I was on abilify since 2007 after coming back from a clinic in Spain. I have a hypocrite for a GP for so many years, I did not know her character until I pushed to get help from her. She has been negligent but proving negligence is always difficult.

I had such a shabby plan written out by the psychiatrist in 2013, this is where it all went wrong. Every step of the way I had to inform my GP how and what to do. I started noticing severe withdrawal symptoms in April 2014, my GP recorded that I had been impaired, but according to her it was because a member of my family had passed away and was causing me to become depresses. This offended me as I was entitled to grieve the loss of my family member. I found this callous, at the same time I had dropped 50% according to the plan from the psychiatrist at the time so it was not my fault.

 

I was working at the time and could not concentrate or hold down a job, the Gp never informed me about the withdrawal effects whatsoever so I was surprise at what I was experiencing. I mentioned to her that my head froze around that time and begged her to help me. it was approx. at that time that she arranged for me to see a psychiatrist with regards to my healthcare, 7 months after starting withdrawal. I had to put the information to her, she was always silent with me and never spoke, just wrote things down afterwards. I never knew where I stood.

 

Overall I have felt victimised by her on every level. as she has withheld information from me and yet refused to even acknowledge me yet played the sympathetic GP.  For four years, I have been coming off medication it could have taken less time. I just don't know what to do now. I have been mocked and had to put up with sexual comments from psychiatrists. I have dignity, I am entitled to it. I have lost 4 years of my life to this. This did not have to take that long.

Edited by scallywag
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Altostrata

Hi, Kiki.

 

It's been so long since you posted in your Intro topic, I moved your post here.

 

Are you off all drugs now? How did you go off? How do you feel now?

 

Many people here are profoundly disappointed in their doctors, as they've been no help at all in going off drugs.

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ChessieCat

Hi Kiki,

 

This is a quote of your new post so that it gets more coverage:

 

hi there, i know this may seem a bit random but does anyone know if there is a clinic which will diagnose dystonia. I am desperate for help, i think GPs have been behaving in a way as if for me to foget that I have it or for it to wear off. I feel desperate for help. I really do. My memory is so poor it is incredible. I am  in a desperate position. Please help, I cannot take this anymore.

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kiki2015

I'm experiencing tardive dystonias. I had a crisis and my frustration reached its peak. I ve felt aggressive and suicidal ideation. I'm on amisulpride 150mg and abilify 5 mg . Is this normal?

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UnfoldingSky

Hi kiki, Welcome to the site.  I don't know the drug amisulpride, but do know Abilify can cause the issues you list--usually almost any psych drug can, sadly.  How long has the TD been going on? Are you tapering at all, trying to stabilize, etc? I'm sorry for what you are going through--I had tardive dyskinesia symptoms and they cleared up, I believe a combo of Celexa and Zyprexa caused them for me.  How bad are your movements?

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kiki2015

Hi unfoldingsky, I'm wanting to withdraw but doctors don't let me. They see me as a patient with a chronic mental  illness and I presume think I'm now stable. I have always tried to dispute my diagnosis as it has been done unfairly. 

I've had to diagnose myself with tardive dystonia, but I am told ' oh, you look well to me. I can't see any problems with dystonia.'  The denial is incredible. I have dystonia across my neck, jaw, throat. My larynx sometimes feels like its tightening and I felt as if I was being strangled. My former GP didn't look into it properly at all. It also affects my temples. 

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Altostrata

Welcome, kiki.

 

Dystonia is a serious adverse effect of your drugs. You need to calmly and tenaciously communicate this to your doctors. You need to minimize your drugs, but you will also need to manage your behavior so you don't get sent to hospital, where they will give you more drugs.

 

See Tips for tapering off aripiprazole (Abilify)

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Risilox

Hello kiki2015,

 

17 hours ago, kiki2015 said:

I have dystonia across my neck, jaw, throat. My larynx sometimes feels like its tightening and I felt as if I was being strangled.

 

It seems that you have cervical dystonia, oromandibular dystonial and laryngeal dystonia.

 

How long have you got the dystonia? It could be acute dystonia and not tardive dystonia.

 

17 hours ago, kiki2015 said:

Hi unfoldingsky, I'm wanting to withdraw but doctors don't let me. They see me as a patient with a chronic mental  illness and I presume think I'm now stable.

 

If you have tardive dystonia if it is possible it is recommended the discontinuation of the offending drug because increases the odds of recovery. I read that if it is possible the discontinuation should be done with a rapid taper, maybe in a month, because the higher you are on drug more the chances of recovery decrease but could turkey should be avoided because it can precipitate the symptoms of dystonia.

Unfortunately the reversibility of tardive dystonia after the discontinuation of the offending agent is only 13% with medical intervention (tardive syndromes are rarely reversible after discontinuing dopamine receptor blocking agents: experience from a university-based movement disorder clinic).

 

Tardive dystonia progresses over time and remains focal only in a minority of patients.

I read that high dose of Vitamin E can stop the deterioration of symptoms.

 

Regarding the memory loss they are probably caused by the dystonia because drug induced movement disorders involve cognitive dysfunction.

If you have acute dystonia this will be reversible when you are recovered while if you have tardive dystonia it clears partially with the discontinuation of the offending agent (pseudodementia in tardive dyskinesia).

Korean ginseng, quercetin and ashwagandha can be useful for significantly reverse tardive dystonia related cognitive dysfunction.

 

17 hours ago, kiki2015 said:

I've had to diagnose myself with tardive dystonia, but I am told ' oh, you look well to me. I can't see any problems with dystonia.'  The denial is incredible

 

I have continouos muscle twitching throughout the body that persist 8 months after a misprescribed olanzapine and I think I have tardive dyskinesia but the many doctors that saw me to deny the damages of these drugs say it is only stress.

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kiki2015

Hi Risilox for all the information. 

I'm not sure if I have acute or tardive dystonia. I'm sorry that you are experiencing twitching and that you have tardive dyskenesia. Do you know if you will get better? I find relief knowing that there is support out there even if it's patient to patient. I'm not anti psychiatry. I'm just disappointed with many things. I remember a psychiatrist seeing me and prescribing me 10mg of olanzapine and citalopram 12 years ago. I stopped that 11 years ago. I don't know whether the damage is old damage from all the meds I had to take when in hospital 10 years ago or from what I've been taking recently. I took ability for 10 years 2007- 2017 and amisulpride this year from April 2017 till now. I stopped abilify, but it was a difficult and shabby withdrawal. Nothing helped. Nobody apart from mum to monitor me. I stopped completely ability in Jan 2017. The psychiatrists said any memory loss from anti psychotics was insignificant and all prescription medications cause memory loss. So maybe I could have still had withdrawal up till April when I was started on amisulpride and abilify when I started again on 5mg in November. 

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kiki2015
On 25/12/2017 at 10:29 PM, Altostrata said:

Welcome, kiki.

 

Dystonia is a serious adverse effect of your drugs. You need to calmly and tenaciously communicate this to your doctors. You need to minimize your drugs, but you will also need to manage your behavior so you don't get sent to hospital, where they will give you more drugs.

 

See Tips for tapering off aripiprazole (Abilify)

Hi Altostrata, I've been trying to do that. I'm not giving up and looking for all possible avenues. Since I've been on amisulpride I've put on 12 kilos, I'm a large I used to be a small or medium clothes size. I'm scared I won't make it without medication. I was withdrawing from abilify last yr 2016 from 2013 Sept. to Jan. 2017. I went up down doses. I had no real medical help. I suffered severe memory problems and spent days staring into space and not remembering what I had done. I'm very scared I may be so damaged I may not recover. However I still feel it's difficult to live with this rapid weight gain and dystonia. I feel very stuck and worried I'll be on my own again.

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Altostrata

If you reduce your drugs too fast, you may get symptoms of disorientation, confusion, etc. Many doctors are unaware of this.

 

If you decide to minimize your drugs, please read Tips for tapering off aripiprazole (Abilify)

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kiki2015

I am worried about the muscle contractions and I would say my tongue feels numb most of the time, could this be the masking of more severe dystonia. Could this turn into tongue rolling and worse if I come off medications ?

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kiki2015
On 28/12/2017 at 7:23 PM, Altostrata said:

If you reduce your drugs too fast, you may get symptoms of disorientation, confusion, etc. Many doctors are unaware of this.

 

If you decide to minimize your drugs, please read Tips for tapering off aripiprazole (Abilify)

Dear Alto strata,

Could you please respond to my post.

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kiki2015

Is it possible to still lead a normal life even when someone is withdrawing? By that I mean is it possible to work, study or enjoy life as much as possible within one's circumstances?

 

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nz11
16 minutes ago, kiki2015 said:

Is it possible to still lead a normal life even when someone is withdrawing? By that I mean is it possible to work, study or enjoy life as much as possible within one's circumstances?

 

Yes it is if you are withdrawing slowly, moderator brassmonkey has done it, have a read of his intro. I think he tapered over 5.5 years.

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Jerr

I want to pass on a helpful tip. When I WD from klonopin I ended in ER from non stop vomiting.They gave me Vistrail and Promethazine both anti histamines and made my WD better, not easy but better. Bless you all!,

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nz11

You might like to put in your drug sig what dose of abilify you are currently on.

 

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nz11
On ‎12‎/‎26‎/‎2017 at 11:29 AM, Altostrata said:

Welcome, kiki.

 

Dystonia is a serious adverse effect of your drugs. You need to calmly and tenaciously communicate this to your doctors. You need to minimize your drugs, but you will also need to manage your behavior so you don't get sent to hospital, where they will give you more drugs.

 

See Tips for tapering off aripiprazole (Abilify)

This.

 

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nz11

If you feel your doctor is not playing ball get a second opinion.

I see you live in the UK then how about seeing someone on the Rxisk Healy team. Could they be more helpful.

 

You could look into finding Joanna Moncrieff I don't know if she is practicing anywhere. Maybe she can point you to someone helpful if not.

 

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kiki2015
1 hour ago, nz11 said:

Yes it is if you are withdrawing slowly, moderator brassmonkey has done it, have a read of his intro. I think he tapered over 5.5 years.

5.5 years ???? That's an eternity. I was thinking 6 months Max. With proper input

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kiki2015
29 minutes ago, nz11 said:

If you feel your doctor is not playing ball get a second opinion.

I see you live in the UK then how about seeing someone on the Rxisk Healy team. Could they be more helpful.

 

You could look into finding Joanna Moncrieff I don't know if she is practicing anywhere. Maybe she can point you to someone helpful if not.

 

Hi yes, I've tried all that- getting a second opinion. I've tried contacting her but she won't see me. She has many other patients and in another part of London. It's not that simple. I've been to private and nhs psychs. I also don't want a second opinion. Doctors always get together and agree in the end because they don't want to stand alone on their opinions. Just my experience. I've been on all different meds for 16 years. I'm sick and tired of them. 

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kiki2015
6 minutes ago, kiki2015 said:

5.5 years ???? That's an eternity. I was thinking 6 months Max. With proper input

With a proper taper it shouldn't take more than a few months. That's what Peter breggin writes. I don't dislike psychs. I dislike lazy psychs.

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Rosetta

Kiki,

I have found relief from dystonia by using adhesive heat patches through the night.  In the US they are called ThermaCare Heatwraps.  They are one time use and have patented iron that heats up on contact with air.  Sometimes I use 2 or 3 of them at once - one on my neck, one on my forehead and one on my forearm.  I wake up without a headache or at least with a mild headache when I use them.  In the day I use a microwaveable heat wrap.  (I bought an electric heat wrap, but the off gassing of the plastic was more than I could take.). 

Wishing you some relief and rest,

Rosetta

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nz11
2 hours ago, kiki2015 said:

I've been on all different meds for 16 years

 

2 hours ago, kiki2015 said:

With a proper taper it shouldn't take more than a few months

 

So what then is your understanding as to why  you been on these drugs for 16 years!!

Do you think that the reason you have been on these chemicals for 16 years is because you have not been tapering safely (far too fast) and so you have been trapped. 

Here's the thing pharma nefariously have never defined 'slowly' , here on this site we see it being defined as 'years' for many. Sure there are people who can come off in a month or two but you don't appear to be such a one. Therefore do you think  you need a paradigm shift in the defn of 'slowly'. We have all had our eyes opened to this.

 

Alto has kindly given you the link on tapering abilify ...it would be worth your while to read it with an open mind. It talks about tapering at 10% of the previous dose. That means for 5mg to get to 0.5 mg (say) it will take 21 months or nearly two years. That is how 'slowly ' is potentially defined.

But you know what with 16 years exposure I would guess that 10% may be too fast for you, 5% (42 months) may be a safer option. This is not a 'lazy ' taper but in fact a wise and safe and harm reduction taper approach....and I might add proven.  

Many people are finding they have to taper down to much lower than 0.5 mg before they can jump off. 

 

2 hours ago, kiki2015 said:

That's what Peter breggin writes.

 Are you able to give  me a reference for this. 

I do know that Breggin has said this "there is no formulae for how long it takes to withdraw safely, comfortable and effectively"..."the patients response to each drug reduction ends up determining the length of the withdrawal" And for many here on this site we are talking many years.

Based on your posts and drug signature imo i'd say you are going to need to taper for years. 

 

Sorry you have had no joy with the getting a worthy second opinion. I can empathise with your frustration.

Unfortunately we are not talking about one bad apple doctor in the apple barrel here sadly  the whole barrel is rotten.

look forward to reading your thoughts on this and your Breggin reference.

 

I cant speak for Brassmonkey but I would say that he might tell you that he couldn't have done it any faster. 

nz11

"It is a mistake to assume that individuals require many months or years of antipsychotic medication" Breggin 2013

 

 

 

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kiki2015
48 minutes ago, nz11 said:

 

Where are you getting this from...your pdoc?

So what then is your understanding as to why  you been on these drugs for 16 years!!

Do you think that the reason you have been on these chemicals for 16 years is because you have not been tapering safely (far too fast) and so you have been trapped. 

Here's the thing pharma nefariously have never defined 'slowly' , here on this site we see it being defined as 'years' for many. Sure there are people who can come off in a month or two but you don't appear to be such a one. Therefore do you think  you need a paradigm shift in the defn of 'slowly'. We have all had our eyes opened to this.

 

Alto has kindly given you the link on tapering abilify ...it would be worth your while to read it with an open mind. It talks about tapering at 10% of the previous dose. That means for 5mg to get to 0.5 mg (say) it will take 21 months or nearly two years. That is how 'slowly ' is potentially defined.

But you know what with 16 years exposure I would guess that 10% may be too fast for you, 5% (42 months) may be a safer option. This is not a 'lazy ' taper but in fact a wise and safe and harm reduction taper approach....and I might add proven.  

Many people are finding they have to taper down to much lower than 0.5 mg before they can jump off. 

 

 Are you able to give  me a reference for this. 

I do know that Breggin has said this "there is no formulae for how long it takes to withdraw safely, comfortable and effectively"..."the patients response to each drug reduction ends up determining the length of the withdrawal" And for many here on this site we are talking many years.

Based on your posts and drug signature imo i'd say you are going to need to taper for years. 

 

Sorry you have had no joy with the getting a worthy second opinion. I can empathise with your frustration.

Unfortunately we are not talking about one bad apple doctor in the apple barrel here sadly  the whole barrel is rotten.

look forward to reading your thoughts on this and your Breggin reference.

 

I cant speak for Brassmonkey but I would say that he might tell you that he couldn't have done it any faster. 

nz11

"It is a mistake to assume that individuals require many months or years of antipsychotic medication" Breggin 2013

 

 

 

I always resisted the medication. Yes, my understanding that I have been trapped for not being able to taper properly during these 16 years. Like all here taking medications have proved worse than the illness and I have had to spend longer coming off them. However I stopped them altogether in Jan. 2017 and restarted a different one in April 2017. Then ability was added in November 2017 to help with sky high prolactin levels. I don't know if this was the right decision. Anyway. Every time I see doctors every appointment has started with, ' when can I come off the meds.' They don't listen to me. I have developed a type of dystonia which I have had to diagnose myself, this is also another reason I wanted a quicker taper. I can't stand the feeling any longer of having my neck, jaw and throat twisting and the feeling as if I am being strangled which is there 24/7. If I knew I was going in the right direction I would accept a long taper but as you say nobody knows and it is all guesswork. My quality of life is diminishing every day. I'm angry. I appreciate altostrata ' s hard work here. It's just my difficult circumstances . Sometimes I feel as if I'm choking , it's gone from bad to worse everyday. As for Peter beggin, if I remember correctly he managed to take a patient off meds within months or during a summer term. But I understand we patients will have to take longer by ourselves. 

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nz11

Kiki sorry the medical profession have let you down so badly.

I guess if you taper fast then you will have to find ways to cope with the wdl symptoms, drug free going forward but I think you know that.

 

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