I feel like I'm going to lose everything

DX'd - Sz/SzA
#1

I’ve been experiencing Parkinson type or neurological type symptoms which have been gradually getting worse since October. I also have raised prolactin. I have been on chlorpromazine since I was 20 so 4 years. I have had fluctuations of stability but I’ve not ever been in full remission, I have symptoms which get worse with stress.

But I have nearly finished a degree, I’ve started a training in a career and I do some small bits of work here and there. I feel I’ve come so far but nothing drastic as I still get crippled by symptoms which will stop me functioning as I’m sure many of you know what that is like.

But now I have been put into a difficult situation, my physical symptoms are affecting my every day life, and it’s all new, the only issue I had before was photosensitivity. I have tremors, my gait is unsteady, I feel drunk all the time despite not touching alcohol, and I’m exhausted. This causes difficulty to the career I’m pursuing (acupuncture), I love the training but I can’t go into practice even though that is three years away, i do practical sessions but my ability to cope is suffering.

But reducing my medication will inevitably be hard, I have relied on it and its the best medication I’ve been on until now, they want me to go onto Clozaril this is the main drug of choice as I’ve tried four AP’s now. But I have to go through the reduction, then initiation, and I’m terrified of losing everything, I’ve said I’m not starting until my degree is finished, but my career training could be deferred by six months as I could be too much of a mess or sedated as I don’t know how I’m going to react.

I’m also scared of the voices getting worse, and being lost in terror, I am terrified of losing all the clarity I have to an extent now. This feels like my pivotal moment, it could go either way in my recovery, i could go on clozaril and all will be resolved for the first time in ten years or it could send everything up in the air and I’ll take ages to kick back.

I wanted to come off all medication but my cpn talked me out of it. I just wanted to se what I was like, I’ve not been off medication since becoming unwell and I just wanted to try. Im afraid I don’t know what I want out of this post, I would appreciate any experience with coming off medication like how you coped and starting/staying on clozaril. I would also appreciate any kind words if there is any going… I don’t have much faith in my own body and mind right now.

Thank you in advance for reading, I hope your day has let you cope as best as is possible, take care,

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#2

You haven’t been posting here in a while.
Am I right @Dante13?
Welcome Back and please consult with your doctor before doing anything with your meds

#3

Your an inspiration to me to continue fighting the ‘good fight’ despite the physical body wearing you down.

Have you had an MRI to check for a possible pituitary tumor that will also symptoms as you described?

#4

Yes, you’re right wave, I haven’t been on in a bit, but I find no one truly understands like those here as you guys have been and are in it! I have no intention of touching my meds without supervision, but thank you for putting that in there as I have been tempted for the first time recently to not be so compliant but I’ve talked it through with my cpn and he did his wise words and I listened.

Not messing about until I’ve been told to start!
Thank you for replying!

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#5

Wow thank you, that’s given me a lift I needed today!

I have had an MRI of my pitiuartry gland and it’s come back clear, so meds it is. Thank you for checking that though, I’m thankful for having a lovely endocrinologist consulting with my psychiatrist, so he knows what to do when it comes to that.

Thanks for replying,
Take care!

#6

I’'m taking 10 mgs of Abilify and I want off all drugs too but I’ve been told, “not a good idea”. So I won’t good luck with your situation Daniel.

#7

Thank you Daniel. I’m on abilify too but only on a small dose as I don’t cope too well with it. My best advice is to be open with your care team, I was so near to rebelling and i’ve always been med compliant (well apart from in hospital when I was 17) but when I was open with my carer and cpn it was a huge relief, it was all fear based which was gradually getting caught up in my thought processes. But all that did was increase the fear.

So they heard and respected me and said the same, I’m glad you were honest with them and are taking their advice, I’m doing the same, it may not be easy but its the best thing at the moment we are in.

Good luck to you too and thank you for replying!

#8

Acupuncture training put me in hospital for 9 months (after a year of doing Shiatsu lessons)

I have no idea how anyone is supposed to understand all the studies, my brain just not intelligent or memory or understanding of it all, was too much…

just don’t think it’s acupuncture or death and destruction and a life of medication - a ruined life

it’s not

i now write and produce plays - co founder of a theatre company… in production at the moment in my city with a 60 min play

acupuncture - is good but it’s not everything you can do

i feel theatre is all i can do

#9

Thank you Chrystal, I’m sorry to hear that happened to you but i’m glad you found your own direction writing and producing plays is a hell of a skill!

I think I needed to hear that, I’m trying to keep my mind open, into what I can do if I get stuck or coming off meds/ going on clozaril doesn’t resolve the symptoms. I will have a degree under my belt by the time I start to reduce. The acupuncture is a passion and I enjoy the theory but not so much the practical, and like you mentioned, I’m really struggling with the memory.

It’s 7 years since I was admitted and I think this was meant to happen now, the year of transition, it could be my awakening (not delusional- just how I feel) and if it means I find something else to do then that suits me! It just feels that i’m on a pinnacle, that something major is going to happen… and that may lay with a different career choice. I just need to feel that it’s okay. I just don’t want to let people down.

My fear is more based on what others will think or what i may put them through. But you have opened my mind a little, I will just take it a bit at a time, i’m young, one career choice isn’t necessarily the be all and end all. So thank you, and I am really glad you managed to find your own way after hospital, you’ve been a hope giver today too, take care.

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#10

Thank - you
its a bit less than 11 years since last hospital for me - 7 is some going as well!

You would let no one down - imagine a footless person saying that to their coach or whatever - it’s not a choice it’s what we try to do and sometimes can’t

be careful - pinnacle stuff - make sure you can check that in with someone you trust and get them to tell you if it sounds mad.