Despair

Sorry to read about your difficulties GG and Vivian. 

Fedex..you always make me smile with your way of expressing yourself...I was reading some of your story about Mrs Fed and the masseur to my hubby and he also laughed! 

 

Hi goldengirl,

              I am sorry to hear of the problems you have been having,i have only just seen this thread.Have not been visiting much lately.

              I first flagged up the Anti-depressant/Azilect problem back on 20/6/2011.At the time i was still on DA's.So the thread gradually disintegrated because my mind was everywhere.Ironically you are on the thread but posting from a DA perspective,so the starting theme"Azilect and Anti-Depressants" probably had no relevance to you back then.

              I have posted a number of times since then on the topic.Warning pwp about the interaction complications,in particular the seratonin syndrome.As you have just discovered,"mirtazapine" is the only one i was advised.When i was looking into it a couple of years back,i was the first one to question this with pd that the psychopharmacist had heard of.I have been on mirtazapine for around 2 years now.It is linked with weight gain.I am however lucky enough to have a high metabolism and a able to exercise at a level to burn off the calories.So am still the same weight.

              At the time and since then,my Neuro didn't have a clue.Stll doesen't.It makes me wonder how many more people have to play a game of russian roulette with this combo of meds.Do the Neuro's and doctors not keep up to date with the meds situation?Obviously not.On the back of the DA issues,that i know you feel strongly about,we have this one.They still don't learn.I think WE the patients and carers,know more.

               Anyway,i have just had one of those"well man"examinations.All bloods,mot etc and am fighting fit.So after 2 years the Azilect/mirtazapine combo is definitely safe and i take the max,45mg each night.It subdues me from visiting here,helps me sleep.

                As for the ineptitude of the hospital your husband was admited to goldengirl.I also posted a long posting on my experience when admited to hospital to have my gall bladder removed,approx 3 years ago.I was treated terribly.I tried to put forward a complaint afterwards,but nobody really wants to know,PALS,they are a joke.

               Anyway goldengirl.My admiration continues for you for being a first class Wife and carer and for helping all those struggling with DA related issues and this matter also.I hope things are now better.

                     Take care

                          Titan

Hi Titan

You are right...I was so immersed in the DA horrors I never noticed the posts you made about the Azilect/Anti-depressant problems.If only I had then we would have been saved much despair.

How can it be that many neuros have no knowledge of the dangers ,or know  and have no solution.

It seems that those who try to find a safer med have to set about reinventing the wheel.

As about 50% of PWPs experience depression surely all involved in their care should know that Mitrazipine is the least likely to set off the Seratonin Syndrome?

When I phoned the PDUK helpline they could only suggest stopping the Rasagilene /Azilect and waiting for the 6 week washout period to be over before starting an anti- depressant.

Not really appropriate given the suicidal state of the patient!

I would have hoped that those monitoring the Forum take note of problems and useful solutions and information which feeds into the knowledge of the entire PDUK team, as eventually did the DA/ OCD dangers and advice about detecting and treating the problem.

My husband is responding well to the Mirtazipine and I am trying to keep him away from chocolate which he is in danger of developing a new addiction for!

After our holiday we will try to get him interested in new social activities but it is hard as all his confidence has gone after all the devastation caused by the Requip.

I do agree with you that it is we the patients and carers are beginning to know more than those who are supposed to advise us!

But we are so lucky to have the Forum in which we can help each other.

Could I ask Ezinda to look at why your posts about the dangers of Azilect and anti-depressants did not lead to investigation and formulation of advice for those who contacted PDUK looking for help?

Perhaps the team could highlight the use of Mirtazipine as the safest option, the dose gradually increased under supervision to detect problems quickly, possibly  in The Parkinson  magazine ?

The pharmacist at the psychiatric hospital who researched the problem for us also said that Agomelatine would be the first choice but it was an unlicensed drug and it would be difficult to get a license quickly.

I wonder what that would involve?

I am so glad to hear that you are coping well after the difficulties you faced.

I send you my love and thanks for you compassion.

Love

GG

 

 

Hi goldengirl

I've passed your message on to the relevant people here in the UK office. 

I'll get back to you shortly.

Thanks,

Ezinda

Hi goldengirl

Sorry for the delay in getting back to you. I've had a chat with the helpline manager about this. 

He told me that the helpline nurses will speak with each person and offer information based on their particular circumstances and suggest that they then speak with their healthcare professional if there is an issue.

We would not offer any individual solution as 'the safest option' unless the research team or our clinical director identified peer-reviewed research to support that.

The drugs booklet (which has gone through the detailed information standard and review process)  is also very clear about the need for caution when taking MAO-B inhibitors but it doesn't offer one single option. 

If you think that you weren't advised properly on the helpline, do contact them. That is obviously something we would take very seriously and probably should deal with directly with them. 

I hope this helps

Ezinda

Hello,

I was looking through the titles of the discussions on the Forum and opened this one.  I read about you and your husband's strife and to let you know that I am really humbled by your predicament.  You are a very brave person and hope you will accept my best wishes for the future.

I was referred by my neuro consultant to a colleague of his who is a professor in Psychiatric-Neuro problems and she prescribed for me Trazadone Cloriede capsules 250mg per day.

All the best

Casie

Thank you, Casie for your kind words and helpful advice.

I will ask the neuro about this drug on our next appointment.

We have just returned from our holiday to celebrate our 50 th wedding anniversary, but it was not a great success.

My husband became more and more confused and anxious and decided to stop taking the Miertazipine.

We still seem to be floundering  and unable to find the help we need.

Love

GG

http://www.theguardian.com/society/2014/dec/09/pfizer-offers-settlement-over-parkinsons-drug-alleged-to-have-caused-addictions

Why legal action and settlements in other countries and not one legal company will take GSK on about the thousands damaged by their drugs in this country?

And no support from PDUK to help us ?

GG

Still in despair.

For those of you who want to know more about the legal situation in England and Wales and what options might be available to you, we held a Q&A last year about this (I'm having some difficulty putting hyperlinks into my message but you can find it by searching for "Q&A impulsive and compulsive behaviour").  People in Scotland and Northern Ireland are advised to consult the Law Society of Scotland and the Law Society of Northern Ireland. 

We are also aware that an article in Daily Mail Scotland that came out today states that a class action is being organised by the solicitor's firm Leigh Day - we contacted them and they said that it was inaccurate and they are not involved in any legal action on this matter.

Hi

Sorry to hear you are having such trouble.  If you haven't already been introduced to a Parkinson Nurse Specialist, maybe you could find out if you have one in your area and if you do, she/he has a wealth of knowledge and if they can't help, they will put you in touch with the people who can.

 

All the best,

Casie

hi golden girl, my name is lee , i,m the founder of a group on facebook called Parkinsons Awareness Worldwide , it was set up because of the terrible side effects my partner had to go through due to requip ,which started for us in 2009 and nearly lost us everything including ourselves ,as you know from your chat with the lawyer on here , after 2007 we dont stand much chance of doing anything about this , because of a few extra details glaxco had put on the leaflits this is very unfair when we see other countries being able to sue or take there cases to court , it makes me so angry i cant do nothing about this , but i,m still going to try , but i,m going for the administraters of these meds , as i believe they hav,nt followed guidelines for these meds , my arguement will be this , in the beginning my partner was told she had pd and was to go on a med called requip , which they did,nt have in on that day , we went back to the hospital and the neuros secretary came out and said just follow the instructions , i,m sure some sort of warning should have happened, within a couple of months sue started to spend money like no tomorrow , started to tell lies , and started to gamble , so i complained to neuro what was going on , they said they think we should up the meds , and the more signs she was showing and the more i complained the higher the meds went up . within the first 6 months she had got all side effects , hypersexaulity , gambling , porn , webcams , spending , aggresive , drug cravings , she actually turned bisexual , and started to like women , and wanted me to do all sorts , this carried on for 2 and a half years , of pure nightmares , again, the guidelines state to drop the doses if these signs appear , but our neuros kept upping them , once they realised we was,nt making this up in 2011 they took sue of meds , and all side effects stopped , just a few stayed , but she started getting mental health issues , hallucinations , hearing voices , terrible depression , picking her skin , anger , and pd symptoms got worse , she had got dopamine agonist withdrawal syndrome ,and this has taken the mental health team a good few years to sort out ,with mood stablisers ,now if you read the guidelines to daws , it says if people suffer a bad reaction to da meds the worse thing you can do is take them off them , the only way to treat it is to lower doses and add a different med , which in our case they never did , they whipped her off requip too quick , and now because of this she is on the highest amount of sinimet allowed , and now there is not much more they can do , so i believe our fight is with the admins of these meds , if you would like to contact me for a chat on these issues please feel free to join us on face book , i hope you and your family are ok ,and wish you all the best of luck with your fight https://www.facebook.com/groups/parkinsonsawarenessww/?ref=ts&fref=ts,,,,,i still think my own story is on here from a few years ago 

I am in the USA and am wondering what is meant by "Seratonin syndrome".  I have always been depressive but more so with PD.  Was given SSRI (seratonian re-uptake): 4 different ones by 3 doctors.  They absolutely send me into PD overdrive.  I shake until I have to be held down to keep from falling out of chair/bed.  Even my tongue tremors until I can't talk.  Sometimes this is the very first pill!  Also  do this at dentist with Lidocaine.  I am NOT on any medication at all so it is not reactions to the other meds.  So what does "Seratonin syndrome" mean?  Thank you so much.  I and my family have a history of being sensitive to meds that is why I don't go to doctors, often, but the sundowners, dementia, depression is causing me to have to go again soon.  Thank you all so much you all are great!

Golden Girl my god change hospitals your's sounds terrible you DO-NOT  have to put up with treatment like that.

I don't Know where your base is but quite frankly you deserve a medal and the very best support my love from all of us on here. If you have trouble contact your primary care trust make a formal complaint you have a voice be heard no one deserves what you and your husband have gone through.

Take care & stay strong BB xxxx

Thank you for your kind words, bettyblue.

My husband is much better now and stopped taking the anti-depressants as they made him feel anxious and confused.

He didn't want me to make a formal complaint to the hospital in case he had to go in again and he was labelled a troublemaker!

His discharge meeting was a shambles with only 3 out of 5 turning up, one of them a doctor he had never met!

The occupational therapist referred us to Age UK and they have been wonderful.

They introduced him to 2 social groups which he enjoys each week, an indoor bowls club which he also likes and a volunteer who he sees one afternoon a week who goes with him to try out new activities and gives him ukelele lessons.

All these new activities with over- 60s allow him to make new friends and get out regularly.

He pays £2 a session and that includes tea and cake!

The years of DA induced OCDs meant he lost all his friends and the resulting social isolation and time to brood on it all contributed greatly to his depression.

Hopefully he will continue to improve.

Age UK also offered computer classes, short guided walks, a choir , creative writing classes,  yoga etc but he can't fit them all in!

I can't praise them highly enough so if anyone else feels lonely, give them a ring.

All the new meds in development give us hope that the future might bring some relief from the symptoms.

Love

GG

 

 

 

GG I am happy I could help in anyway you may need me I will be here for you both.

 

BB xx

Hi Jaffy

Serotonin syndrome in my understanding refers to drug interactions that lead to  having to much serotonin that can cause significant problems .In PD the use of Monoanimine oxidase inhibitors like azilect and selegine stop the re uptake of dopamine so the patient retains more of their own dopamine in their nerve synapse for use .With the wrong chemistry these drugs may affect serotonin levels and give rise to a range of physical symptons known as serotonin syndrome . I believe in practice such problems with these drugs are very rare my consultant warned me of the cheese effect but said he had never known it to occur and it was a theoretical risk based on previous uses of this group of drugs .Any one please correct me if I am wrong.

Have a look at http://en.wikipedia.org/wiki/Serotonin_syndrome

Thank you so verrrrry much for your reply, iceni.  I looked it up as you suggested.  I read some to hubby and he said "you were nearly dying!"  I know it took weeks to recover.  It also said ocular clonus which our dau has suffered since West Nile Virus = am wondering if it was the WN or the meds she is still on!  Thank you so much.  Bless you.

 

Hello Golden Girl,

 

Just wanted to say Hi and let you know I haven't forgotten you but I have had some difficult times lately with my hubby and also stress and my back decides to get very sensitive confining me to home for some months apart visits to my husband. I am finding it ever more difficult to have the energy both mentally and physically to deal with you just get soooo! tired of the battle don't you. I am hearing of more people with PD getting refused nursing home places or being asked to find to another home, there really needs to be a home for people with neurological conditions in every area as most homes cannot manage these complex conditions.

I don't post on here much now as after 40 years involvement with PD and PD UK it saddens me to see so many of the complications we have experienced over the years are now being experienced by so many new members and I had hoped the situation would be much better by now instead it's the same mistakes being made by people who should know better.

I do hope things improve for you both, I have had friends who have found Age UK very helpful also friends who had problems with memory went to a dementia group and the support was amazing for both parties, not just support but lots of information and help in getting support.

Sorry for new members to sound negative but we were in our thirties when we started this road and the future is in your hands now to really beat the drum and make or demand a difference. Many years ago when we were part of Yapper's we were all very active and some of the publication by National office today have been as a result of our challenging doctors about thing like Pain diet and many other things, so get together and bang that drum louder.

In the past I have made a formal compliant backed by our consultant and pd nurse and it got us nowhere, likewise if the nursing is not good enough where can you go; nowhere as there is nowhere else.

The home where my husband is has over the last year improved with new managers so after four years of constant battling I feel much relieved, I hope that this national company will see the difference and need for more homes like this and expand around the country.

Much love to you and your husband Golden Girl I know you will understand where I am coming from. Big hug

vivian

 

 

Thank you so much, Vivian...it is a perfect day to read you kind words as it is my 70 th birthday today!

But I need to  emphasise  that 70 is only 21 in Celsius!

We muddle on with life being easier now since Age UK stepped in.

My husband goes to 2 social clubs and indoor bowls and woodwork class.

He is getting out much more and speaking to people.

his physical state is much the same and well- managed by 2hourly Sinemet but he longs for the extended version to become available le here so that he can go longer between doses.

His memory and confusion don't seem to have got any worse.

Emotionally we cling on, having family therapy. Which is hard but may help in the long term.

I feel for you trying to cope alone with all the difficulties with care.

The lack of knowledge in hospitals and care homes is staggering.

I still feel horrified when my husband was distressed because he was told to walk to the nurses station when he woke up in the morning to collect his meds in the psychiatric ward...and being told he would be referred to physiotherapy and receive a visit  for assessment in a  week is so when he lost his walking stick and asked to borrow one!

I know you do all you can to educate carers but where is PDUK in all this!

I still find it hard to understand why it took years for them to begin a campaign to alert PWP about the OCDs and DAs and failed to find any legal help whilst it was still possible to mount a class action.

i do think of you and send my love.

GG

 

gg. my dad always said double it add 30.so 20 add 20 is 40 add 30 is 70 .always worked fo me .hope both ok