Hope1

Hope1

57 posts in this topic

Hi. i'm new to the site.

 

my story is long& complicated,will try not to write reams.

 

about 14 years ago i was prescribed Seroxat for PMT.looking back i became lower in mood once i'd started taking it. at psychiatrist appointment i told the consultant i was experiencing odd involuantary movements in my wrists/hands. he wrote in my notes that it was "probably the Seroxat" & that he'd keep an eye on it. he increased the dose! within a few days i became v ill,terrible involuntary movements of my whole body,slurred speech,eyes clamping shut,twitching,tremours etc etc. serotonin syndrome was mentioned quietly.

 

it was very frightening,i had 2 young children. for a long time we felt so alone& in the dark. a neurologist said i had Tardive Dystonia as a result of Seroxat!! we'd never heard of Tardive Dystonia until that time. i feel so sad thinking back to that time,i was so young.

 

then Panorama did a series of tv programmes about Seroxat/GSK!!! we contacted the solicitor involved in trying to bring a class action.eventually we were told that my case was very rare & i didn't fit the critera to proceed but a proffessor consulting on cases wanted to look into my case. we paid over a thousand pounds( hard going when we had a mortgage,2 kids & only one wage coming in!)

 

i finally got answers! i'd been prescribed Stemetil (a anti psychotic drug for a middle ear problem) at the same time as the Seroxat. Stemetil is a anti nausea drug,he said that the Stemitil was the main cause but that Seroxat had contributed to my condition/s. he said Stemetil & Seroxat are "contra indicated".

 

the professor said i have Tardive Dystonia,Tardive Dyskinesia & Restless Legs Syndrome as a result of taking the two drugs together.

 

my gp has been very supportive.

 

a couple of years ago i went to see her,i have Neuropathic pain - part of the damage to my body. she prescribed Amitriptyline.

i wasn't sure about this given the SSRI Seroxat was part of my condition. i questioned her about it,reminding her about the proffesor's report,the involvement of a anti depressant. she said "it's fine,this works in a different way". i then said,"are you sure?". she said yes.

 

i have a congenital heart problem(tachycardia) for which i've had several operations for. i went to see her about 8 wks ago,my heart problem was causing concern.she arranged some tests.

 

i then went back to her because the spasms were really getting me down,so painful. i do have times when i really ought to go to the dr but i find it very hard to go after what's happened to me. she gave me pain help.

 

i ran out of pain medication, rang & spoke to her about it. she told me i need to come off Amitriptyline immediatley!! she told me to drop 1 tablet off that night.

 

i am so devestated to now know that with my heart condition & the risk of Amytriptyline causing involuntary movements i should not be on it.

 

so,i dropped off 1 10mg that night as she directed. what a terrible weekend we had! i was so ill! i had awful nausea,the runs, a rotton headache,became more twitchy,sensations of insects crawling all over me(even felt it was inside my eyes),so tired i just wanted to stay on the bed.. it was really awful,i was so weepy. my husband spoke to my dr on the Monday,she told him to put it back up "with immediate effect".

 

i feel so terribly let down. from reading up we realise it was a withdrawl reaction. given the damage from prescribed drugs i already have i'm devestated to be in a repeat situation. i'm worried about the long term effects on top of what i already have, now my heart too. given that i drew her attention to the proffessors report that is part of my notes i am at a loss to make sense of it all.

 

Tardive Dystonia,Tardive Dyskinesia robbed me of the life i had but we'd adapted,i wasn't bitter,i felt lucky i was still here. but now i'm facing a horrible withdrawl from a drug that i should not have been prescribed given my history. i feel stupid,angry and frightened and very let down. i can't stop crying. i'm really struggling to get my head around it all.

 

sorry such a long post,could have wrote a lot more!

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hope, thank you for joining us.

 

I'm very sorry you've been through all of that.

 

Yes, it seems you are a person who should not be taking antidepressants. Few doctors understand that antidepressants are not safe for everyone. Once you've had a severe adverse reaction, you're vulnerable to others.

 

Few doctors are even astute enough to recognize a withdrawal reaction. Still, given your history, I would think you have the basis of a complaint against your doctor.

 

You are taking 10mg of amitriptyline now, is that correct?

 

See this topic: Tips for tapering off amitriptyline You can do this gradually and safely.

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hi, thanks for your reply.

 

it's my history that makes the situation so difficult to get my head around,it is the same dr.

 

no i'm on 30mg,my dr told me reduce it by 10mg right away. i'm back on 30mg following her advice now.

 

i will check out the link,thankyou.

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Hope ~

I wish I had the right words ~

That is alot to wrap the head around - I have a similar feeling and my medical history is not as complex -

There is a wealth of knowledge and experience in this group - FAR beyond any Medical Doctor and I hope just knowing that encourages you -

Virtual hugs to you ~

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Hope, if I were you I would not take any more advice about or prescriptions for psychiatric medications from this doctor. It sounds to me like her knowledge is not deep enough for this kind of practice.

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reading your replys made me weep,thankyou.

 

i now know from reading more that once you've had a negative response to withdrawing from anti depressants you're at a higher risk.

 

the first time round i was a mess,in&out of hospital where they stopped & started new anti depressants Prozac was in there along with several others. i remember being seen by a psychiatrist & talking to him about my condition,the electric shocks were awful. i was too frightened to tell him i thought i had insects crawling on me,i kept looking at my feet expecting to have to brush ants off me but there was never anything there,it drove me mad. i was scared the dr would think i was mad & they'd lock me up.i know now that's a horrible symptom of withdrawl.

 

at no time in hospital did they allow any wash out period. a toxic cocktail!

 

i feel so vulnerable,scared of rocking the boat & my GP kicking me off her books,i need medical help. so many dr's haven't heard of Tardive conditions,others don't want to hear it for many reasons. i still can't understand why she would put me at risk by prescribing them after all the history in my notes.

 

i know i shouldn't be on Amitrityline now. i'm angry with myself, i doubted her prescribing them but listened to her reassurance.

 

from how quickly the withdrawl of 1 10mg tablet effected me i know i'm in for a tough time withdrawing. i'm scared of the possible effects i might have on top of already dealing with so much.

 

coping with the Tardive Dystiona & Tadive Diskinesia is tough,it robbed me of the life i had before Seroxat & Stemetil. the dr's told me what happened to me is very rare,1 in so many million. i think this is more common than we're told.

i'm not sure what to do right now. we're taking time to surf for info at the moment. the support has helped me,thankyou x

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Hope,

I'm not familiar with the UK healthcare system. Is it possible to be treated or get a referral from the Professor you mentioned?

 

It is terrible to not be able to tell doctors what we are experiencing because of fear of more diagnoses and drugging. There is a horrid loss of power in an inpatient setting.

 

Hugs.

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hi, been looking at DR Healy site in bits - thankyou.

 

my husband has emailed the proffessor who helped me. he's been in touch to say he'll look at.we're not sure where he's based now but it sounds more hopeful. we've not heard anything from our GP.

 

i am concerned about how my neuropathic pain's going to be managed if i can get off the Amitriptyline.

 

i've not got much confidence in Dr's after everything i've been through but we'll see.

thankyou x

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Hope,

Great to hear that you've contacted the Professor. He may be able to point you in a good direction regarding your pain also. I've been treated for chronic pain, though not neuropathic, and know there are MANY options. You might want to read posts by 'Whatever' and 'EFXRob' who have also been treated for chronic pain.

Please let us know what he suggests. Keep in mind that even physicians who are very knowledgeable about drug dangers may not know the full impact of withdrawal.

 

Barb

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Barb, thankyou. yes i will post,he sounds busy so we'll need patience( husbands strength - i'm impatient lol).

 

i don't want to get low on top of all this - i'm not depressed right now but got so weepy when tried to drop the dose,felt so ill! all the withdrawl symptoms stopped the day after i'd taken my "normal" dose.

 

all this is stiring memories of the start of my problems with Seroxat-i had PMT but ended up in such a bad way pysically i got very,very low(storing pills up etc). i do wonder if some of the very low mood was part of withdrawls as dr's stopped & started new anti depressants on top of reacting to my drug induced disability. maybe i'll never know the answers.

 

the Tardive Dystonia & Tardive Dyskinesia have been really tough to deal with,i felt such a burden to my family. even now i get very embarrassed at times. my husband says he's just grateful i'm still here. i think laughter helps us to get through a lot of the time,i make jokes about it to cover my embarrassment.

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Hope, if I were you I would not take any more advice about or prescriptions for psychiatric medications from this doctor. It sounds to me like her knowledge is not deep enough for this kind of practice.

 

I have to agree with this.

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Hi, long time no post. here i am again.

 

my Dr instructed i put the Amitriptyline back up to 30mg.i stayed at that level for several months before she instructed me to get a pill cutter& try again. my hubby cut them into 1/4's. i managed to get down slightly and now take 2&1/2 10mg tablets & have been at that dose since last yr. i think i have been on the for 4 yrs. last wk i spoke with the Dr about Neuropathic pain again. she said she thought a different drug would be better but that i need to come off the Amitriptyline.

 

i told her i was very poorly the last time i tried to come off it. last time she made excuses to cover the withdrawl i experienced.

 

i have told her that i don't accept the things she said & that with all the problems in my notes & info on the net i did not accept her comments,that i knew i'd experienced withdrawl. she seems to acknowledge that now.

 

we are keeping a diary. i am so upset to be in this position given my history.last yr my hubby emailed the proff. who'd helped me & did get a response but then nothing. as far as we are aware he is working abroard now.

 

given my history with adverse events from anti depressants,all the drug changes & the report from the proff. stating a SSRI had been part of the Tardive condition i have i really don't understand why Dr started me on Amitriptyline. she is now telling me it is not a anti depressant!!!! she said they only use it for pain. our pharmacy say it's both. i feel Dr isn't being honest with me.

 

the Tardive Dyskinesia is bothering me more today. we have read somewhere that these drugs can mask symptoms. i am concerned that my problems with the Tardive Dyskinesia may get worse as i withdraw.

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I've just read your thread Hope1, I don't know what to say, you've had a horrific time. I think doctors prescribe Amitriptyline for various things, I am tapering off Prozac and before Christmas I spiralled into dreadful insomnia, I saw a locum doctor who gave me a prescription for Amitriptyline, he explained that they prescribe it in doses 10mg - 30mg for insomnia and pain relief (I think) and I think he said 100mg+ as an antidepressant, he wrote it down for me. Someone I work with has been prescribed it for occasional insomnia.

 

I was going to put a link to the thread about tapering off Amitriptyline but I notice that you've already seen it.

 

I wonder if you could change your doctor, or have you considered seeing someone like Dr Healy? I believe you can get consultations with him on the NHS, someone else here saw him recently.

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I was going to say the same, Hope, if you could see Dr. Healy you might be able to have an intelligent conversation with an expert about your situation.

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Hi, not feeling so good. started small elecrtic shocks. yesterday morn they weren't too bad, got worse later in the day. i ended up so tearful. palpatations too.am feeling quite flat today. neuro pain is bad too.

 

i meant to talk to the Dr about my bladder but forgot. it sometimes feels like i'm getting a water infection,i need to go but it's a trickle.i get a horrible sensation & it makes me feel as if i need to go quick to the toilet.it "flares" up so i end up having upstairs days to be near the bathroom.i'm not sure if it's part of the Tardive Dystonia.Dystonia doesn't affect the bladder but it can affect muscles supporting it.

 

hubby is going to write to Dr Healy & we'll send a copy of the reports i have. i didn't know you could get Amytiptyline in liquid..

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p.s Alto thankyou for the email :)

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It sounds to me like a urinary tract infection, I've had that before, you might need some antibiotics.

Sounds like you have a great husband.

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Hi, i'm not running a temp so don't think it's a infection.drinking plenty in the hope it'll settle.

 

electric shocks still but not too bad so far & crawling sensations plus neuro pain. i get un pleasant sensations anyway with the Tardive stuff but it feels worse than normal. palpatations - but wouldn't be surprised if stress was setting my heart problem off!

 

i'm a bit scared of rocking the boat with my dr incase no one will help me.i've seen how some Dr's cover things up. it makes me feel v vulnerable.

 

hubby is supportive with all this, thank God.

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When you put the Amitriptyline back up to 30mg, did these symptoms go away?

 

If so, perhaps you should try 30mg again.

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hi,yes when i go back up it settled. palpatations a lot today,not sure if that's my heart problem or withdrawl?? not feeling so good with that - dizzy & bit breathless.

 

i don't know what to do for the best re putting it back up.i'd have to start all over again.

still can't believe i'm in this situation with my history.

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It sounds like withdrawal.

 

You might want to go up slightly, to 27mg for example, to see if it helps, and taper by much smaller amounts from there.

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i'm finding the crawling sometimes prickly sensation horrible- it's in my legs,feet,trunk,arms - even face.i can feel more of a tremour too. my body feels more twitchy. the electric shocks/flashes of pain are sometime triggering my spasms off. slept but exhausted.

 

why didnn't my dr mention withdrawl? and why didn't I think about it??? i'm so cross with myself,i knew this wasn't right but i let myself be persauded to take a antidepressant..

 

i'm hoping/trying not to go back up but not sure i can take this.i could cry. we can only move by 1/4's of a tablet with the pill cutter.

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Hi Hope,

Towards the top of this thread Alto suggested looking at David Healy's stories website.

 

I looked at it just now and about the second post on the thread by someone called FID, dated 01 March, talks about a new instruction to GPs in the UK to put patients struggling with withdrawl in touch with an SSRI withdrawl specialist.

David Healy would seem to fit the bill to me! I know you have written to him as you have said so in your thread.

 

Maybe look at this post and take the information to your GP. Let her know about this new instruction and her responsibility to you. Tell her you have done the hard work and found a specialist...and even written to him! All she has to do is back your referral to him as instructed and as due to you.

 

You need an expert to look into this and help you through it. I agree that she doesn't know enough to help you. You do not need any more set backs - you have suffered quite enough! It is time to insist on the right help.

 

Duncan Double in Suffolk would be an alternative person to speak to perhaps. Google him.

 

FYI, it is difficult to get a referral through the NHS out of county. Both myself and a friend who tried to get referrals were told that Wales is a different country and therefore we could not be referred to David Healy. Both referrals went to out of county funding decision boards. Maybe Ducan Double would be a good alternative to have up your sleeve. Suffolk is within England....might be easier!

 

Hope this helps a bit. I will be using this information too!

x

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You can also make an appointment with Dr. Healy and pay him independently.

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Hi, i doubt we could afford it. am feeling pretty low,can't seem to shake it.i'm so exhausted.

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Hi Hope,

Just to let you know that a contact of mine who wrote to Prof Healy, having been refused an NHS referral, has just recieved confirmation that he can consult him independently. As far as I know he is not being charged, and neither was I, so please persist. Your case is important and your health matters very much indeed.

 

Hold on to some faith that some people will believe you and will try to help you.

I definitely believe you and can see that you really need some expert help with this.

Keep going Hope.

x

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I too think it might be worth pushing to see Dr Healy, I know someone else here who wasn't in his area saw him through an NHS referral so it is possible, I think your surgery owes you the effort to get a referral for you.

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ok. hubby sent a letter to him a few days ago so just wait & see. can't shake this flatness off.im so exhausted.

thankyou x

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Hi,having a terrible time with shocks,they zap down my back etc & are triggering my spasms off (Tardive Dystonia). pain is awful. my husband went to collect my prescriptions & spoke to our pharmacist about it,he advised alternating my dose. he said it's really horrible & hard but there's nothing really to help.

 

i'm just hoping Dr H gets in touch. if i can get aliquid & go slower that might be better.i'd forgotton how awful this is.

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Hi Hope,

That sounds very nasty....is alternating the dose a great idea? I would stick to getting advice on here if I was you, unless your pharmacist knows anything about tapering off this drug.

 

I hope David Healy will come back to you soon too.

Fingers crossed.

xxx

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Marmite is right, please don't alternate your dose, it's terrible advise given out by most doctors and pharmacists who have no clue, it makes you feel worse, consistent dose every day is the way to go, gradually tapering down.

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i'm nowhere near as informed as you guy's but i'm sure it isn't a good idea. i'm trying to hang on for Dr H. i have felt to go back up but i'd really like Dr H to see what's going on.

 

i wonder if the new drug i've been prescribed for neuropathic pain might help(???) but am wary of giving my dr a excuse to blame the electric shocks,crawling etc on a new drug.

 

i've felt so low,am i going to have even more damage with Amitriptyline?

i appreciate the support,thankyou.

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not doing so good,electric shocks are horrible,triggering spasms off & sharp pain.crawling is horrible,nausea & i feel chilly. my heart is playing up-i don't know the heart is my heart condition,the drug or withdrawl.

 

wishing it'd all hurry &go.

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It sounds like withdrawal.

 

You might want to go up slightly, to 27mg for example, to see if it helps, and taper by much smaller amounts from there.

 

Some people find fish oil helps the zaps, and magnesium helps, too. see

http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

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