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neroli
On 9/6/2019 at 11:31 PM, Kristine said:

Thank you dearest Neroli, today has slowly taken a turn for the worse. The nature of this beast. So cruel

 

Just sending love

 

💜💜💜

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Kristine
20 hours ago, FarmGirlWorks said:

dude! You are seeing random acts of kindness from withdrawal madness. Yes, there are a lot of symptoms as well but, for me, when there is even a glimmer of healing no matter how short, I know it will eventually get less and less and less until (knock on wood) recovery comes. I am so happy to hear this and you are a rock for swimming thru the rest of the WD sludge.

Thank you dearest FGW, thank you for writing this...my resolve has been challenged even more over the past few days after being hit with all symptoms at once. It is difficult at times like this to remember that recovery will come. So I am grateful for the reminder. Sending you love. K xo

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Kristine
19 hours ago, neroli said:

Just sending love

 

💜💜💜

...and to you dearest Neroli 💜💜💜

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neroli

Thank you, Kristine.

 

💜

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Rabe

Oh Kristine I was SO excited to read your first post about your symptoms receding and your having some better days!!!  That is wonderful ... and God knows you deserve that!!  You are so amazing to me!!  

I am sorry that things hit harder again....but I believe the days you had will come again...and again...and again...hopefully sooner than later.  Take care dear Kristine!!  Love and hugs to you!!💜

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Carmie

Hi Kristine, 

 

Just popping in to see how you’re doing. Are you doing any of the cold water bathing again?💚

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Gemma92

Hello Kristine. I always like to visit your thread and see how you're doing. I see you're almost off all your drugs and doing better. All your hard work is paying off! You are so strong and I wish I was more like you.

 

I am thinking of you everyday as well as many others who are suffering from these drugs. One day we will be veterans--and giving hope to others who will go through the same battle we have won. 🙏

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neroli

Hello Kristine

 

I see you are off the Diazepam.  Great going.  Wishing you lots of love

 

Neroli 💜

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Rosetta

Thinking of you!

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Kristine

Thank you dearest @neroli, @Rabe, @Carmie, @Gemma92 And @Rosetta for all your messages. Yes, I’m now off the diazepam. I’ve got the extra burden of a virus at the moment. So I’ll update later. much love K xo

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Harriet8
On 12/11/2017 at 3:59 AM, Kristine said:

Just thought I'd throw another question into the mix....what are people's thoughts relating to neurologists? Do they understand w/d?  The last time I saw my psychiatrist (11th November 2017) she sent me off for an brain MRI and referred me to a neurologist.  

This feels particularly relevant to me just now.  I'm not sure if it's the right place for me to comment/ask a question.  Apologies if it is not.

 

I continue to go through horrendous times without reprieve.  I had exchanges with Altostrata and MMT about my condition.  I think the question that is coming closer to the fore for me is: do I continue to try and search for a clinician to support me, or do I bite the bullet and try and educate myself as much as I can and do it myself with the support of people on here?  I have actually already begun to taper Zopiclone, but I believe the Citalopram is probably what I need to focus on, but I'm not sure.

 

I am housebound and pretty much bedbound/sofabound because it is so difficult for my body to be upright.  I don't know how common that is?  I have many challenging symptoms.  I have seen around 10 neurologists, probably nearly as many psychiatrists in the space of the last year.  Many have held their hands up and said basically, "What a horrendous state you are in but there is nothing I can do."  Others have diagnosed FND but offered nothing to help with that.  The rehab centre I went to said my condition was far too severe for anyone at their centre to be able to work with and asked why I hadn't approached top university departments.  The latest neuro has done bloods, CT scan and due an EEG in a couple of weeks.  Wanted to do lumbar puncture and MRI, but my tremors are so bad and hyperacusis too that I thought I wouldn't be able to stay still enough to do these without strong sedation.  Anyway, I suppose I'm facing some of my early trauma stuff, wanting to feel safe, wanting an authority to turn to to help me.  On the one hand, I think I need to be wise and seek out appropriate clinical support to supervise/monitor me as I try and manage my condition - which it looks like is going to require my taking the risk of trying to reduce the Citalopram, despite being so unstable, because there is no known why of stabilising.  Presumably, everyone on here is needing to be mindful of risks at all stages?  Seizures? How to spot when something is becoming dangerous.  I reduced Citalopram too quickly and ended up calling the paramedics back in April 2018. 

 

I am not managing to be very concise.  Sorry.  I'm scared of doing this on my own.  I'm scared of doing it with a GP I have to teach how to de-prescribe, how to spot for signs of things becoming dangerous, when I don't know and I don't think he does!  The last psychiatrist I saw suggested I go to a treatment centre to start the first reduction of Citalopram.  That doesn't feel like the way to go.  I would be paying for 7 weeks in yet another institution, merely to observe just the first 10% reduction of 1 of the 4 drugs I'm on, in another country, with still nobody to continue with me beyond that.  I have written to the treatment centre, just to be clear so that I can rule this out as an option.  They advertise helping people coming off benzos and opioids (as so many places do).  I asked them how they do this safely in 7 weeks given that we now know that the brain can only cope with a 10% taper over 8-week intervals.  I also asked them if they help people come off SSRIs.  I await their response.

 

I feel trapped.  It's so difficult.  I am unable to live a functional life as things stand (cook a meal, go out anywhere).  I have had to move in with my 70 year-old parents, one of whom has cancer.  It is not sustainable for them to be my carers for any length of time, unless I start to improve.  I'm looking at 5 years of tapering if I'm lucky.  Most likely more.  And I'm starting from a very unstable state.  It's so tough.  I imagine there must be others here who have faced similar difficulties?  

 

Lastly, in my desperate attempt to find a clinician who understands this stuff, I thought about trying to track down what I believe are 8 delegates who are psychiatrists who attended the conference in Sweden.  I don't know if this is wise (or will bear fruit), or if I need to abandon my hunt for someone who is informed enough to support me.  I feel like I'm living in permanent crisis, hell.  Forgive my intensity.  It is no exaggeration.  It is so very difficult to know what to do to help myself.  It feels impossible to survive - both the prospect of having to ride out symptoms worse than I already have, and having to find somewhere to live to do this (maybe losing my own home), and somehow funding suitable care whilst I go through it.  And so alone.  I don't want to give up.  But it is very hard to keep going when it is impossible to see a viable path ahead.  I want to continue to try and find one......

 

Thank you all.  

 

Harriet8

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neroli

Love and thoughts to you, Kristine. It's tough and you are hanging in.  

 

Neroli 💜

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Rosetta

Love to you, Kristine.  I hope you are having some moments of relief here and there. -Rosetta

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Kristine

Hello dear friends, thank you @neroli and @Rosetta for your caring messages. I think of you both often.  I’m now three weeks off diazepam and I’m just coming out the other side of pure hell. The head pressure got so bad I just wanted to drill a hole in my head to relieve it. Akathisia became almost unbearable...my whole body and brain felt like it was swarming with bees and I literally wanted to rip my skin of and crawl away to some sort of safety. But one can not escape oneself. Sweating buckets, Terror, SI, rage, tremors, nausea and DP and DR worse than I’ve felt in a long time. Reality was blurred. I seem to have returned to my WD normal...headache/migraines, insomnia, bone aching fatigue, muscular flu like pain, mild sweating, brain sludge, cognitive difficulties and so on. 

Just wanted to touch base with you all,

Much Love K xo

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neroli

Hello Kristine

 

Well, don't know what to say, really - except you have been exceptionally strong enduring those three weeks of intense, intense WD effects.  And I'm pleased they have eased off now.  Here's hoping that level of intensity is over now.

 

WD normal is challenging enough but I'm glad you're back down to that.

 

Hoping that you see improvements from now on - wishing it for you.

 

Much love

 

Neroli 💜

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Kristine
21 hours ago, neroli said:

Well, don't know what to say, really - except you have been exceptionally strong enduring those three weeks of intense, intense WD effects.  And I'm pleased they have eased off now.  Here's hoping that level of intensity is over now.

Thank you dearest Neroli, thank you for your support, I know things are tough for you as well. I’m so sorry. One day we will get through this. Then look out world!!!! Much love K xo

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neroli

yes, indeed:

 

1 hour ago, Kristine said:

Then look out world!!!!

 

It will happen.

 

much love

 

Neroli 💜

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Kristine
19 hours ago, neroli said:

It will happen.

💖💖💖🙏

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neroli

it will.  and you have the strength to get there.

 

xxxxxxx.  💜

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bheb
On 10/16/2019 at 1:16 AM, Kristine said:

Akathisia became almost unbearable...my whole body and brain felt like it was swarming with bees and I literally wanted to rip my skin of and crawl away to some sort of safety. But one can not escape oneself. S

 

Oh god if this wasn’t so horrific and unfortunately relatable it would almost be poetic! 

 

Big yikes. I am so sorry. There are some things you can escape and distract from. That sensation is not one of them. I guess you can pace around but for me at least I still feel it. 

 

Sometimes when i have one one of those massive episodes I try to make myself appreciate the lower level of agitation I always carry around..but no, there’s no getting used to that either. Still, I try to force some perspective on myself.

 

Anyway, sorry to hear that. Haven’t kept up much with you, but glad you’re at least back to wd normal and hope that your normal gets easier. 

 

 

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Rosetta

((((((Kristine))))). Much love, Rosetta

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