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Eleven10

Eleven10: 30 months off Prozac

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Eleven10

Hi JC

 

Definitely I would like that pact. I so miss that exhausted but happy feeling when you finish a race, best feeling in the world.

I see a physiotherapist but I'm not making much progress, and it makes me feel very dizzy after the session. Maybe osteo would be better,my physio says my muscles are locked solid in my neck and back.

 

Thanks scallywag. I religiously kept a symptom diary for 18 months, I gave up. I'm not a defeatist I just honestly didn't see a pattern. The first 8 months were excruciating and if I hadn't improved slightly at the end I genuinely wouldn't be here now, but after that it's just stayed the same. I can honestly say I'm no different than 2 years ago and I just don't get it. :(

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KarenB

I'm not the maths expert, but if you had tapered by 10% monthly, with the occasional longer hold, you'd probably just be getting to the end of it by now anyway.  You might find it interesting to work out if your maths is better than mine.  It just takes the body as long as it takes to heal and regroup. 

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Eleven10

Thanks karenb Although in heinsight I would love to go back and do a very slow taper, it's not a guarantee to success, unfortunately it seems as many others are I am super sensitive to withdrawal. Neither can I accept that it will take as long as it takes, I'm at my limit of suffering and I really feel my body is begging for help. I feel years of withdrawal is doing my body serious long lasting harm and I need to to take action. I just need to muster the strength to do that. Iv promised my family Mummy is getting better soon and I idint intend to break that promise. Time for action.

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KarenB

It's true there is no guarantee, I was more trying to offer a comparison which might explain why you still feel so bad after so long.  Meaning, our brains are slow to heal. 

 

I understand that feeling of a body getting seriously drained by w/d, especially for us mums.  To counter that (somewhat) I eat a really good diet, some vitamins and minerals, and make sure I get regular good rest.  What sort of help is your body wanting? 

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Eleven10

yes I understand thank you. I think it was the shock of withdrawal that has left me in this state.

 

I'm glad you manage to get rest, unfortunately that is just not possible for me as my brain has lost the ability to sleep. I average 3 hrs.

There is nothing I haven't tried to sleep naturally. I have spent slot of time and money trying every natural method. I'm not sure what it's asking for but it's desperate for rest and peace, the only way I see to help it is medication again which I never thought I would say but my life is at risk so I have to be brave and try some things. I'm not a drama queen In fact the opposite but things have got too much for me.

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Junglechicken

Hi JC

 

Definitely I would like that pact. I so miss that exhausted but happy feeling when you finish a race, best feeling in the world.

I see a physiotherapist but I'm not making much progress, and it makes me feel very dizzy after the session. Maybe osteo would be better,my physio says my muscles are locked solid in my neck and back.

 

Thanks scallywag. I religiously kept a symptom diary for 18 months, I gave up. I'm not a defeatist I just honestly didn't see a pattern. The first 8 months were excruciating and if I hadn't improved slightly at the end I genuinely wouldn't be here now, but after that it's just stayed the same. I can honestly say I'm no different than 2 years ago and I just don't get it. :(

 

When we were living in Canada, I had months and months of osteo treatment for all kinds of issues relating to WD.

 

They were excellent at getting to the root cause of the pain, and any pains I had just disappeared either the same day or after a couple of days.  This would include headaches/migraine.

 

I also took my time to explain to them about AD WD, and the effect the drugs had on the CNS, and how my body had become one big stress ball.

 

In early WD (this time last year), I was in excruciating pain, suffering from sciatica, lower back pain so bad I was on powerful pain killers.  My whole body had gone into shock and my muscles and joints were spasming something chronic.

 

Despite having run 3 marathons back to back, I had NEVER suffered from any of these issues before.

 

The only reason I am not having regular osteo treatment at the moment, is because we don't have the money coming in and I don't have the medical insurance I had from my previous job.

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Eleven10

I started dosulapin 25mg and it seems ok for the last 4 days, haven't got up for the toilet 7 times a night like usual and feel slightly less edgy. All the other horrific symptoms continue but I'm hopeful. I'm going to go up to 50mg in a week and stick there. I have everything crossable crossed.

 

I have also had an osteo asesemnt. He said my muscles in my upper back and around my spine were locked solid. Hopefully will be able to looses them slightly. He said he had seen it in a severe drug reaction before and is a sign of the nervous system being in shock. Not that I needed to be told what I already knew.

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Junglechicken

At least the osteo was able to diagnose the cause of the locked muscles (WD) Eleven10. That's impressive, as it's so specific (in our case) and should stand you in good stead to reduce your pain.

 

I'm glad you went to see the osteo, and hope it helps you.

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Eleven10

He didn't think it was a antidepressant that caused the reaction but a drug used in cancer treatment and the lady's pain eased in a few months not years but I suppose it's similar

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Junglechicken

He didn't think it was a antidepressant that caused the reaction but a drug used in cancer treatment and the lady's pain eased in a few months not years but I suppose it's similar

I see, so over the next few months I am certain you will notice your pain reduce.

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AliG

Eleven.  The ability to sleep can come back even after a long period of time. It sounds trite , but with time the sleep cycle can normalize. If you feel you have to take drugs to stay functional then , so be it.  It can be done without , but it can take time and not everybody has the time to spare.

I hope it goes well for you and the drugs have the desired effect. Eventually , I would hope you that you might be able to hop off them and sleep naturally in the future.

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Eleven10

Ali.

 

With genuine respect for differing opinions and experiences and I disagree. For many maybe but I know my body and my experiences and my sleep has not improved or shown any signs of improvement in 2.5 years. There is nothing I have not tried and much time I have invested. I have an extremely low quality of life and the insomnia has took me to the edge of suicide. It has destroyed my health caused serious infections requiring hospital treatment and reduced immunity, put me at risk of heart problems which run in our family and many other things.

I don't expect anyone to endorse meds especially on this site and I respect that but if it means I can spend one more hour a day with my kids for me it was a golden unavoidable decision. May not work may mean in playing with fire but I have taken a step forward in my opinion not back.

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AliG

I respect your decision to do what you have to do and i wasn't disputing that in any way . I was just hoping that eventually you would possibly be able to sleep drug - free.

I totally understand if that's not possible and I certainly didn't mean to offend.

 

I have gone down a hard road myself in this respect and battled with insomnia nightly for a very long period of time . I have a family history of " sleep drugs "  so I have a vested interest in helping others find a more natural route but totally understand that everyone has their own history and unique circumstances. At the end of the day we have to do what works individually for each of us. 

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Eleven10

I totally respect that and I certainly wouldn't recommend anyone suffering ongoing insomnia to take drugs, I do think that it can be overcome naturally in most cases but I felt at the limit of suffering. I truly hope it helps and that I can slowly reduce in the future taking any psychotropics does not sit well with me.

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Junglechicken

Just checking in to say hi!

 

How are you feeling?

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Eleven10

Hi JC

 

I'm still struggling but intend to persevere with the dosulapin. I don't think my body can make its mind up if it wants to accept it or not, I'm hoping it does but will try not to berate it if it doesn't.

 

It's devastating to think how close iv got to ending my life in the last 3 years and iv struggled to understand why my body has had such a difficult time in showing any definitive kind of recovery. There seems to be the method of thinking that if we just suffer long enough we will be rewarded and I went along with that thinking for a very long time. It broke me to have nights of "brain cooking" activation and torture that I am unable to describe properly and days of such soul destroying depression such a long time after withdrawal. I totally get that this can be a long long journey and many get that reward at this end but for some maybe because of some genetic vulnerabilities will never get that reward and I think maybe I'm one.

I try desperately to try and remember how I was before I touched a med and I was undoubtedly depressed and ill in some way I don't understand but there was no brain cooking and the depression was not a patch on this beast. Prozac made me feel very well for a long long time but it's also damaaged my brain in the most terrible way.

I'm praying Dr Healy is onto something with the tricyclic but who knows.

 

Ps thanks for asking how I am x

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Eleven10

Update.

I had to come off the dosulapin, my bp dropped so low I was unable to stand up. I'm devastated as I felt I was getting a little of an anti anxiety effect.

I'm now back at square one, 3 years off and the suicidal depression, insomnia and all it's friends are back with a vengeance.

 

I feel there is no end to this nightmare

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Purplestars22

Hey Eleven10, I am also three years off meds it's been the hardest time in my whole life. I try not to get too disappointed that it still is hard at times. Knowing that I have I have surpassed all these years makes me feel strong that I can handle the upcoming years whatever it is. Sometimes I feel disheartened on how tough it's been but I just move forward and focus on my breath. I have a faith you will be okay since you have gotten this far. Practice self soothing techniques such as, EFT tapping, mindfulness, take walks, meditating, using adult coloring books, reading a book, watching a funny show, putting a face mask, lighting a candle, surfing the web. Focus one step at a time, ps22

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Eleven10

I'm glad you are coping and in a relatively good place.

 

I can't read a book I'm too ill and the Prozac damaged my vision.

 

I'm currently sleeping just 2.7 hrs a night and I'm in a dark dark place.

 

I had to postpone my cbt classes as was just too unwell to travel and attend. I do go to acupuncture at the chronic pain clinic but I have not seen benefit.

 

I'm really struggling to stick around at the moment

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nz11

11-10 so sorry you are in this bad place.

I wouldn't worry about missing the cbt classes I dont think cbt can do a lot for acute wdl imo . Have you checked out the Claire weeks thread.

 

 It sounds to me like you thought things couldnt possibly get any worse prior to dosulapin but now they have.

Its very unfortunate that you have done yet another CT 

I was just reading the common adverse effects of dosulapin and hypotension (low bp) was one of them.

 

Wishing you strength.

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Eleven10

Thank you nz11

 

I ordered a couple of her books a while ago I will check them out when I can

 

The dosulapin has not made me worse I'm in the same place as I was prior to to taking it if I feel any worse it's because I feel so disappointed as I feel I was getting a slight benefit whilst I took it.

I only took it for a a few weeks but felt the burning doom feeling lessen just a smidge.. if I thought my bp would stabilise I would stay at 50mg but it was low to start with. I didn't ct either.

 

Thank you for your kind words, I will try some thing else I'm not leaving my child without a fight.

 

Prozac had a devasting effect on my depression in the long run. I never saw true light until I found it but would gladly go back to living in the dusk compared to this darkness.

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Altostrata

Update.

I had to come off the dosulapin, my bp dropped so low I was unable to stand up. I'm devastated as I felt I was getting a little of an anti anxiety effect.

I'm now back at square one, 3 years off and the suicidal depression, insomnia and all it's friends are back with a vengeance.

 

I feel there is no end to this nightmare

 

Hello, Eleven. What were the beneficial effects of dosulapin for you? Did it help your sleep?

 

When you got low blood pressure from it, did you try taking a smaller dosage?

 

Was it Dr. Healy who recommended it?

 

Have you followed our suggestions for sleep hygiene in Important topics about symptoms, including sleep problems ? Keep bedroom cool and dark, block out morning light, etc.? Get off the computer in the evening? Are you light-sensitive? 

 

What is your sleep pattern? Do you fall asleep at the same time each night?

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Eleven10

Alto, thank you.

 

After about a week at 25mg I felt a slight lift in anxiety, and a some improvement in sleep. Around 18 months ago I tried a tiny bit of mirtazapine around 3.75mg. I was awake all night with rushes of adrenaline and I cried with deep depression all the next day. I was very afraid to try to the dosulapin but it didn't have the same effect, it was less activating.

 

Insomnia is one of the worse symptoms, I go to bed so tired around 10.40, I feel my thoughts start to swim as if I'm going to sleep but then something changes and I become extremely alert, I become hypersensitive to noise and despite the exhaustion I have to get up, I get a drink and maybe some paracetamol or ibruphhonen and around 12.30 I drop off but wake after just 2 Hrs, go back to sleep till 4 then I'm wide awake. I'm then filled with looping anxieties, I sometimes drop back off at 8 till 9.30 and that is my night almost every night. Sometimes worse occasionally better but if anything more sleep means deeper depression and more physical pain the following day. The only thing that has lessened is the huge cortisol rushes am of early withdrawal. I still get a dampened version.

 

Anxiety effected my sleep before meds. But in a different way and I was always able to catch up on sleep unlike now.

 

Dr Healy suggested clonidine to me but I struggled to get a gp to prescribe as my bp is low.

Dosulapin was his his second suggestion.

 

Light sensitivity is a huge problem to me as well as noise and tinnitus. I have not had proper vision since the ct.

 

I have black out curtains and I wear ear plugs and a face mask.

 

 

The last psychiatrist diagnosed ptsd from the withdrawal and suggested gabapentin but I really don't want to mess around with that.

 

tje biggest fear I have of medication is activation and anxiety.

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Eleven10

Tinnitus has been a constant for the whole of withdrawal, constant high pitched whistle that get louder if I laugh cry or afte sny stimulation including short conversations.

I took half a zoplicone last night in total fear after 4 nights of no sleep, my sister took me to the shop for basics and whilst walking round I totally forgot where I was, what I was doing or how I had got to the shop.

Anyway the zoplicone half a 3.75 significantly subdued the tinnitus, still only slept fretfully and woke after 3 hrs but to not wake up to a million crickets in my ears was nice.

After 3 years I'm flattened by my progress it's hard to know the next step.

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Eleven10

I was also told by dr Healy that once ssri withdrawal set in there was nothing anyone could do and no relatable treatment and it was unlikely to go away.

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keepinghope

Hi Eleven10

 

Did he say unlikely to go away as in permanent? There are stories on here from people who have healed, but at the moment I don't feel like I ever will. I'm nearly 17 months off Prozac, and feel like I'm slowly losing myself bit by bit, like every wave takes a bit more of my mind with it. 

 

Hope you're doing better and have managed to get some sleep. 

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Eleven10

Hi there.

 

It was a email he sent saying that once ssri withdrawal became entrenched there was no treatment and was unlikely to go away by itself. I was upset and cried a lot but really crying doesn't solve anything. I refuse to just accept this is my life now. I would rather not be here than live at this level of functioning.

 

I'm sorry you suffer, Prozac withdrawal is horrific.

 

If I could calm my tinnitus and sleep a little better I know I could get one foot on the escalator.

 

Much love

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keepinghope

I'd love to prove him wrong! If the brain is as neuroplastic as they think it is, we must be able to heal eventually. It just takes so long. I'm about to buy some fish oil and magnesium and give that a go. Been epsom salt bathing for England but I don't think that's cutting it. 

 

I know how you feel about the lack of sleep, it wears me down. Things will get better for all of us, got to hang on to that. 

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nz11

I was also told by dr Healy that once ssri withdrawal set in there was nothing anyone could do and no relatable treatment and it was unlikely to go away.

 

 

It was a email he sent saying that once ssri withdrawal became entrenched there was no treatment and was unlikely to go away by itself.

 

To be honest i was a bit surprised to read this.

No disrespect to Prof Healy for i have a lot of admiration for him but unless he has changed his view in the last couple of years this appears to contradict a previous statement that it clears up with time.

Actually in acute wdl i highlighted this statement and held onto it desperately.

 

"If the explanation offered above is even partly correct, it implies that with time the condition should resolve but this resolution may take months or years." Healy.

 

So would he be saying then that his explanation is not even 'partly correct'.

 

I do agree that once you trigger full blown ssri wdl all bets are off the table on how to find relief but for me at least it has receded with time and we are talking years.

 

Are you sure you aren't misreading the email?

nz11

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WhySSRI

If I could calm my tinnitus and sleep a little better I know I could get one foot on the escalator.

 

Much love

 

You nailed it.  This is exactly how I feel.

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Eleven10

Yep the tinnitus and vertigo is the pits.

 

Healy does say can be permanent in older people and I'm not 20 anymore!

 

It's difficult when you had depression to start with and it all merges into one..ssris make a condition chronic which we all know but they doesn't deminish the pain of severe depression. But then again Healy does say if ssris worked for you in the first place you probably didn't have severe depression but that is not always the case.

 

I'm discussing ect with my dr this afternoon. 3 years is long enough to wait for a improvement

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nz11

So do you think you have misread the emails then.

Personally i doubt very much Healy said that stuff.

 

Any update on your doctors opinion of ECT ?

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Eleven10

You doubt Healy said what stuff?

 

He's going to speak to another Dr but he said it's definitely an option as I'm so opposed to drugs.

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Eleven10

I have to try one more med then I can try ECT.

 

I don't think I will actually take the med.

 

Something has to change this year for me. I'm having such terrible problems with my ears and neck I barley leave the house but feel too agitated to sit in the house. Torture

 

I'm struggling mentally with the fact I did this to myself. Albeit unknowingly and with ignorance.

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nz11

These are still early days in healing i was like that in yr 3 too.

 

Im pretty sure no one here is going to rec a different med or ect for that matter

The Healy stuff i was referring to post 65

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Eleven10

I'm pretty sure I didn't ask anyone to recommend anything nvz11 and simply repeating what the dr said to me.

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