View Full Version : Hello from Yorkshire, Im New here and living in Chaos any Advice would be appreciated


sarah35
07-25-08, 05:30 PM
Hi I am new to forums , so apologies if I have posted in the wrong place,I really dont know where to start.

we live in york, uk,

I am looking for help and advice for my husband (aged 37) and I also have concerns about my daughter (almost 5)

with regards to my husband he was diagnosed as a child with dyslexia , From what he tells me , He had great difficulty with concentration, writing and co ordination, I am not entirely sure if it was the correct diagnosis, but this was a long time ago.

He has always been seriously restless fidgety, mood swings , tired all the time, etc, Im trying to keep it consise as not to bore anyone, and im sure youll know all this stuff

I had convinced myself that he had some kind of bi polar, he saw a psychiatrist in june this year , who mentioned going to relate (marriage guidence)what a joke, I have since read how bipolar and Adhd can come across very similar and even overlap,

they did say he had depression, he takes citalopram they prescribed this after years of problems with seroxat, and he wanted and was advised to come off the citalopram by cutting his dose, but after having a recent v.low episode they have told him to double the dose immideatly

Things have gotton worse over the years and I would like to ask do you have to have an official diagnosis before the doctor would consider trying medication for Adhd, I know this sounds a dumb question to be asking, But I heard about the referal process to maudsley and after reading how long it can take, I feel quite worried, I am not that wealthy and the thought of waiting years and travelling through london ,is quite a scary prospect.

I have a daughter coming up 5yrs , and she has very odd behaviours will hit me for no reason, will have major tantrums , for no real reason often having one before even asking for what she wants, I have had concerns since she was a baby, as soon as she crawled she used to crawl off, walk, run off, In fact I described her as hysterical, unpredictable , and out of control at 18 months old, she has been seen by someone who hadnt even finished her training, I could have got better advice asking someone at the bus stop,lol
Id prefer not to be reffered back to this particular child and adolecent mental health service.

Another reason im against this place is I also have a son who was diagnosed at 2yrs with classic autism, and for the past 18 months ,Ive been trying to get them to liase with his school for ocupational therapy, as his psychiatrist, missed our last appointment before emigrating to australia , and never even bothered to send any of the documents to his school, so I want to avoid going back there if at all possible.

Just have no idea what to do, If anyone has had anygood experiances of any proffesionals in the yorkshire area ,please let me know,

I have thought about trying to buy medication online, out of desperation, but wouldnt have a clue on which type may help or doses, at the moment when hes not good I give him diazepam that is prescribed to me, but ive been told not to do this

I feel like im living life on the edge due to the erratic mood swings and its very worrying prospect even visiting relatives because of my husbands mood swings, he can seriously overreact, We dont use the car much now because he can get very aggresive over minor things and drives very erratically,

any reply , or sugestions would be greatly appreciated

apologies for my terrible spellings I cant seem to find spell check

Ariosto
07-26-08, 02:39 AM
You do need an official diagnosis before getting meds for ADHD.

There is an organisation in Yorkshire called ADDept (Yorkshire ADHD & Learning Ability Support Group. If you do a Google search on ADDept it will show up. They may be able to tell you about specialists in your area.

There is also an adult ADHD clinic in Cambridge at Addenbrooke's which is closer to you than the Maudesley.

If you need any more help, please feel free to PM or email me.

sarah35
07-26-08, 04:23 AM
thanks for replying

planetdave
07-26-08, 05:10 AM
Hello Sarah, sounds like you're having a torrid time of it.

As you seem to have noticed mental health has a funding and diagnostic crisis - they are overstretched and tend to have pathetic knowledge of 'autistic spectrum' disorders.

Firstly - it's a specialist area and your family needs to be seen by the correct specialists who can tell bi-polar from AD/HD etc etc. Your local NHS hospital is unlikely to be that place.
You need to get your GP or local psychiatrist to refer you to one of the specialist centres...there aren't many in the country and tend to be in the south. You can find a list elsewhere in this forum...poke about a bit.
Secondly - dont be medicating from your ow drug supplies. Our brains have a delicate chemical balancing act going on and each individual is...individual. Drugs need to be carefully considered and customised for the individual. Buying on the net? Well you shouldn't be able to since most of the things we have tend to be 'restricted' and if you do you could well find the drugs squad making a surprise visit.

There is no way your GP will prescribe anything for AD/HD without having instruction from a psychiatrist - so you need to get onto that treadmill first.

Sorry to hear him indoors is chronically depressed and has mood swings. Those are two of my major symptoms - they kept trying to get me onto SSRIs but I get major side effects (thankfully) that stop me taking them. It sounds like they are trying to treat the depression as a lack of serotonin - if it's not (ie he has AD/HD) then he's putting a harmful drug into his body for no good reason. IF.

There's lots of good people hanging around here - especially in the UK section for local knowledge. Don't be shy - ask us questions.
Have a good dig into the threads that are in here - a lot of good stuff is lying around waiting for you to pick up.


[edit]have a look here http://addforums.com/forums/showthread.php?t=44984 the data might be out of date but there seems to be a few people in Yorkshire on that list. Otherwise the most famous clinic in England has to be at South London And Maudsley hospital - but as mentioned Addenbrookes has one (and it's just off the A1 so much easier to get to) as do several other places. It just seems that the Maudsley gets top billing.

sarah35
07-26-08, 07:38 AM
he is going to go see his gp again next week and ask for a referal not decided on where as yet,

my concern is how long it might take to be seen and whether the pct will refuse funding, I dont think we could face a battle,

I have looked around online at the different medications and as you say it looks very unlikely that they can be obtained online, Im not even sure if some are even available on prescription in the UK

many many years ago at least a decade, we both tried speed , personally for me , It enabled be to think clearly which was a nice change , I remember him being very chatty,

do you think it would be a seriously stupid idea to go down this route?

I have no idea really how different or similar something like adderall is compared to street amphetamines, (I suppose at least you know what your getting if its prescribed)

I think im getting dafter by the day, but have kind of felt like im not going to be able to cope for much longer, im sure i will though

thanks for replying to me

planetdave
07-26-08, 11:26 AM
No problem - helping is it's own reward.

Buying street drugs? We (pretty much) all did it..booze, speed or coke - anything that helps you through; it's normal to 'self medicate'. It's almost a symptom in inself.

But it's not as safe or reliable as a prescription. Going private is quicker (GPs will take instruction from a private psych) but obviously s. It's never easy on the NHS,and usually takes a while to get sorted, but they can do it. You just need to know how to twist their arm a bit if they start to quibble. That's where this forum can help out - we have years of experience between us and I'm sure it would give us all joy to see someone use our knowledge to get the system working properly for you.

Colin
07-26-08, 01:28 PM
I was very interested in the addenborookes you mentioned, but i just found the website and entered adhd, attention deficit, in the search but nothing came up

http://www.addenbrookes.org.uk/ (http://www.addenbrookes.org.uk/)

have you got any further info? sorry but I ran out of energy after only a few minutes looking. somethings surprise me, im interested in finding out and thought that would motivate me enought to overcome my tiredness, but it doesnt seem to, yet i type loads like this here, but i seem to find ive developed a way of doing this with my eys half closed, wich probably shows !.

ive already had an unsucesful visit to the muadsley and im in st albans so this isnt as far as some other places.

planetdave
07-26-08, 02:30 PM
Colin

Maybe it's my magic fingers..........google found me this.


Adult ADHD Clinic
Psychiatric Outpatients S3
Box 175
Addenbrooke's Hospital
Cambridge CB2 0QQ
Email: jenny.hall@cambsmh.nhs.uk (jenny.hall@cambsmh.nhs.uk)


Sarah - you will need a referral.

Colin
07-26-08, 03:37 PM
thanks very much :)

dont you think its a bit odd that they have a website wich seems extremly comprehensive but a search of the entire site doesnt mention adhd?

even google found no hits for adhd on that site.
not even that persons name comes up either.

planetdave
07-26-08, 03:46 PM
Their's not to make reply,
Their's not to reason why,
Their's but to do and die:
Into the valley of Death
Rode the AD/HDers.








apologies to his lordship

sarah35
07-26-08, 05:37 PM
hi, i dont know whether i mentioned ( my memory is terrible)but ive managed to find some one who runs a local support group, and who said i could call him tommorrow afternoon for a chat,
thanks again for the advice and links and ,I beleive I have sent you a private message, but with my ability at negotiating my way round here i could well have posted it elsewhere, lol

thanks

planetdave
07-26-08, 05:42 PM
It turned up just fine. Hope this weekend is better.

sarah35
07-26-08, 08:52 PM
ive already had an unsucesful visit to the muadsley and im in st albans so this isnt as far as some other places.

hi can I just ask you mention you have had an unsucessful visit to maudsley?

can I ask how they work things there, Like do they diagnose in one assesment? if so how long is the appointment, or do you have to visit several times?

do they look at other conditions that are maybe similar to ADHD ?

and when you say you had an unsucessful visit, do you mean you didnt get a diagnosis or that you felt they didnt asess you properly, Im not trying to sound nosy Im just curious what they do there.

I guess I should call a few places monday, to get a better idea.

Colin
07-26-08, 10:33 PM
dont forget i went there 8 years ago, i didnt see the experianced psychiatrist only his treanees, they did loads of test and asked lots of questions, and they tested a group of people in the morning one by one, then someone else tested the same group of people one by one in the afternoon so it was an arduous afair.They didnt seem to have one iota of a clue about aspergers, yet they fobbed me off with this, yet when i asked them to specify what symptom i had wich fited the criterea they said id have to go to see someone else to find that out !when i demanded that they give me suficient information to make an informed choice about wether this was suitable they just clamed up and said weve said its our opinion - thats it.they also were quite specific i filed i the questionares for the prev 6 months yet i was on medication. I repeatedly told them I was on mediction, and they seem to have totaly ignored this.yet they state my IQ was 140 and wouldnt of been this high if i hadnt been on the medication.later on i realise my psych had sent them a letter wich was so appaling, it even had said "dont show this to colin or he wil claim it prjudices the outcome" and she sent a leter to my doctor " it wont help our case if he receives a diagnosis of adhd".basically they were just told i was lying about my symptoms to get stimulants.however like I said this was over 8 years ago, and things have changed since them.but my notes stil have those entries and its like an indelible black spot from the pirates of the caribean or something.

mctavish23
07-26-08, 11:44 PM
welcome to the Forum.

sarah35
07-27-08, 06:28 AM
Thanks for telling me about your experience colin,dosn't sound good at all, I don't know whether its just me but from experience I get the impression from our local nhs psychiatric hospital there so behind the times, I had a bad experience with them many years ago,It made me never what to step foot in the place again

my dr recommended i go in for a 48 hour assesement, at the time i was on highish dose if diazepam which i was prescribed by my gp 100mg a day, when I arrived the doctor who was supposed to be assesing me was on leave for the week , they gave me two 5mg tablets twice a day and had to watch me take them , I was on a ward with a lot of people who were sectioned,

anyway i stayed one night before asking to see a duty dr so i could discuss me going home, they agreed that it was probably best that i did.

I got to see the discharge letter and in that letter, id been told my attitude had made 3 people discharge themselves and that i had had to be physically restrained.

Well I wasn't happy to say the least as it was totally untrue, complete lies, so eventually a meeting was arranged at the hospital , I couldn't and wouldn't let this go,no way.

anyway to cut a long story short I got the record put straight , I wasn't even a nuisance to them,I didnt even argue with the staff, it was ridiculous, so to me them writing all this stuff at a time when I wasn't doing so well was equivilant of robbing from the blind,

my gp told me when i was 19 he thought I had aspergers syndrome, i didnt even know what that was then, Ive never had an official diagnosis.

my main problems that ive had since i can remember (about 5 or 6) is anxiety which has got worse over the years I havnt been able to go out on my own since the early nineties , the ocd which kind of took over my life at one point but is not too much of a problem for me these days , and agrophobia which I know it isn't that,its a social phobia, anyway thats me, i feel a bit strange writing all this down in forum, but i suppose its nothing to be ashamed of, i can't actually help any of it.


and hello and thankyou mctavish23 for the welcome

Colin
07-27-08, 07:28 AM
yes thanks for concern, but please note I have what im sure the most unpleasent experience, and this started 13 years ago when i was 33, and like my psych said at the time, you cant have adhd or you would of ended up in prision by now, well the statistics prove that he was partly right, adhd is 5 times more comon in people who have been indside.

my gues is were at least 30 years behind the times, at least, that NICE report is due out, and for the first time mentions adult adhd and that using licensed medication outside of its license is necessary in adults.

but this was known about 30 years ago, someone please corect me if im wrong here.

yet this report will still leave us way behind in consultants who i would have any faith in diagnosing it corectly, as they have no experience in adult adhd becuase it hasnt actually existed untill now.

I gues im on the borderline of not being bad enough to be one of the far more lucky ones to end up in prison, or to just simply end up accetping a life of inapropriate diagnosis of untreatable depresion , and many other conditions.

I just switched off for 8 years, but this minute i feel wide awake and full of energy, becuase i get so excited about the prospect of making some progress.

but i doubt it will even last until the end of writing this.

then when i spend a while thinking to much about the future i get down again, so I actually limit myself to some extent, althoug its usualy my tiredness that limits me.

I got excited yesterday becuase i have been so stumped in so many avenues, and suddenly had a brain storm that might work, but ofc all the people i need to contact to help me are now on hiliday, some for 3 weeks >.<, il make a seperate post on that shortly though.

I seem to have found some emotional confidence wich certainly isnt 100% but it was sub zero before, it allows me to at least think i <may> be able to contact people rather than knowing i cant, wich is the state i ended up in before when I found trying to do anything was obviously not going to get anywhere at all and was realy making me worse.

I was in hospital voulantarily 3 times, I was certain I would comit suicide if left on my own, my friends would come and visit me and ocasionaly take me out in the evening to the pub and bring me back for an hour, at one point i was not alowed to leave when a doctor totaly mis understood what i said, its very frightening.

one of my visitors was punched by another patient, and the staff were so totaly unconcerned about it, they said oh hes like that. i could go on about my experiences there, it gave me ptsd. it was out of the frying pan into the fire. i did think that they would realise how bad i was, but they just virtually said i was faking it.

I was doing a jigsaw puzzle and was so sleepy i was desperate to go back to bed but the beds are so rock hard, it was al i could do to keep my head from the table, and the puzzle did stimulate me enough just to kepe my eyes open. in my notes it said hes perfectly awake doing a jigsaw puzzle, he obvioulsy doesnt realise were watching him and has forgot to act tired.

another psych's commenst in my notes read .. "Colin was lying the whole time exept for one unguarded moment where he admited " cant remember what the rest was but you get the picture.

I never lied about anything to any of them.

but its good you got your record put straight, the chalenge I face now is trying to get a 13 year old entry in my notes from cuasing one consultant after another to totaly prejudge my case before im ever even seen.

sarah35
07-31-08, 12:10 PM
a kind of update, he went to see his gp today, we were informed that the psyciatric at the local hospital had reported that they didnt think he had bi polar ,that he was depressed and possibly had mild autism,

anyway we asked for a refferal to maudsley and the dr said he would have to write to them for their opinion, so wont get to find out for a few weeks as gp is off on leave,

was one of them appointments where afterwards you realise that you havnt presented the point very well,

the gp did question why it was important that we knew if my husband had adhd , I just said isnt it better to know as there might be more appropriate treatments out there because things cannot continue like they have been doing
, also he was told to reduce the citalopram down again , after being adviced 10 days ago to double the dose immideatly.

Can'tregister
08-01-08, 04:55 AM
Hi Sarah,

, also he was told to reduce the citalopram down again , after being adviced 10 days ago to double the dose immideatly.[/quote]

The doctors are obviously stumbling around in the dark when it comes to a diagnosis .

If it looks like a referral might be a long process consider reboxetine as its antidepressant that's similar to atomoxetine the NaRI and non-stimulant thats used to treat ADHD . For me it probably helped to some extent with concentration but did nothing for the anxiety and depression I get in winter . Good luck with referral ,

sarah35
08-01-08, 06:14 AM
hi, thanks i look that one up.

Mouseinthehouse
08-02-08, 02:51 AM
Hello Sarah
Welcome to the Forum1
MITH

Naetha1
08-09-08, 02:51 AM
Hey Sarah, I'm also in Yorkshire (Bingley) and just about to go down the whole diagnosis route...

Best of luck to you :)

sarah35
09-29-08, 10:47 PM
hi everyone,

its been a while ,

havnt got anywhere really with regards to my partner, Getting a referral anywhere, at the mo hes 6 days into coming off the citalopram ,and hes not been good, the dr has given him some diazepam ,not a lot but better than nothing and she only did that as i asked her if I could share mine and get my monthly prescription early, he attempted to come off the citalopram in the school hols and only managed 6 days then he was quite badly affected,shaking dizziness, he has this head jolting tick thing going on which the dr said is probably stress this started a few weeks before the attempted withdrawal

One of the gps in the practise told me i had to ring the pct which i did but they said thats the upto the drs to contact with regards to a referral to the maudsley, TBH this citalopram thing is the main priority right now, One dr even said there is no side effects when coming off these tablets, what a joke,another said reduce slowly and i dont think he has done it anywhere as gradual as your meant to he only halfed the dose for 5 days before stopping, I detest these tablets ,I cant beleive after the problems he had years ago with seroxat they got him on these .

I got my daughter an appointment with dr Daphnee keen in london ,She was really nice and made some good reccomendations that the gp has acted on, so pleased shes finally going to have a speech and launguage assesment done

Eventually Id like to see my partner have an assesment privatly , I dont think its worth the hassle even trying to get seen on the nhs,