Bipolar support thread

youngo

Hi I've just found this forum & have found it interesting reading. although i don't have bipolar, i've been a carer looking after my dad for the last 15 years whom was a rapid cycler for the first 10 years & more recently has started to exibit symptoms more aligned to type II. Thoughout the last 15 years you name it we've prob been through it, sectioning, arrests, court summons, vulnerable adults process, getting debt wrote off, successfully fighting the DLA through a tribunal, court appointed Power of attorny - Just trying to protect him from himself & others. He's had more than 18 psyc consultants, 10 CPN's & over 35 different meds regimes - everytime i recommended more time between changes only to be overruled. I've found the systems in place to help & assist people with mental health issues are hugely & unecessarily long winded & bureaucratic. The local authority "professionals" across both the north east & west of england offer very little value, don't know what proactive management consists of & they see home visits as opportunities to drink tea, eat buscuits & tick boxes - it needs an overhaul & a dead wood clear out. In terms of benefits, i found filling out the forms every 6 months to be overkill & found that for long term illnesses you can be placed on a long term threshold so only every 2 years you have to be reassessed - a letter confirming the medical position from your psyc consult also adds more weight. More recently I had to move him into a residential home as he needed more care. Since then he has been compliant with his meds for the first time in 15 years, has gained stablilty, lost over 40 pounds of excess weight & is looking better than he has for years. I'd be only to happy to share experiences & advice to anyone whom needs to - just let me know, in the meantime keep taking your meds - it's been a 15 year journey & it looks like we might finialling be turning a corner - take care :-)

the_devil_made_me_do_it

Just been diagnosed with Bipolar II & am waiting to get my meds sorted.

If he heard the professor correctly, I think he is going to try me on clozapine, but can't be sure I was exhausted by the end of the assesment.


He intends to try this for about 3 months, then review with a possibilty of adding in different meds. Has anyone been prescribed this drug & if so, how did you find it?

I know I'm going to have to spend sometime doing my own research, but there isn't anything better than hearing from other people with bipolar.

Sueinbirmingham

I have not heard of clozapine being used for bipolar. It is an extremely effective antipsychotic and it is usually used for treatment-resistant schizophrenia. It isn't usually used as a first-line treatment because it requires frequent blood testing because its effects on the blood can be fatal.

If it doesn't work, there's quite a range of other medications that can be tried, on their own or in combination, but I'm guessing that if you're being prescribed clozapine, you've tried a few already.

sarah*a

Sueinbirmingham wrote: »

I have not heard of clozapine being used for bipolar. It is an extremely effective antipsychotic and it is usually used for treatment-resistant schizophrenia. It isn't usually used as a first-line treatment because it requires frequent blood testing because its effects on the blood can be fatal.

If it doesn't work, there's quite a range of other medications that can be tried, on their own or in combination, but I'm guessing that if you're being prescribed clozapine, you've tried a few already.

It's quite common - a lot of the people in my support group are on it. Most bipolar meds either are or are backed up by an antipsychotic IME and all those meds should be monitored with frequent blood tests anyway.

Makes me sooo glad I am (currently ) med free

the_devil_made_me_do_it

Been years since I've been on any anti-psychotic meds. The past 13 yrs mainly been on a variety of anti ds. Prozac being the most recent combined with Buspirone.

As I siad I could've heard him wrong. I know he mentioned it was an Atypical anti-psychotic drug, but too be honest I'm pretty clueless & it was discussed at the end of the assesment.

Congrats Sarah on being medication free. That's my long term intention. However, I guess I need stabilising first before I can consider that step.

Sueinbirmingham

sarah*a wrote: »

It's quite common - a lot of the people in my support group are on it. Most bipolar meds either are or are backed up by an antipsychotic IME and all those meds should be monitored with frequent blood tests anyway.

Makes me sooo glad I am (currently ) med free

Are they being treated by a variety of different health trusts, or all by the same one?

Clozapine isn't in the NICE guidelines for bipolar and it's very expensive, both in price per tablet and also because of the very frequent blood testing, by comparison with the far less frequent testing for other drugs. Valproate, for example, only needs annual testing.

The RCPsych recommend its use only after at least two other antipsychotics have been tried. It's a shame if any of its members are ignoring its guidelines.

de1amo

i have been on respiridone at a very low dosage for 10 years and have no intention of thinking i will ever be meds free-- to me bio polar cannot be controlled without meds--i take carbamazipine and ventlafaxine as well and feel fine and symptom free--if i miss i get very ratty and cant sleep without respiridone)

the_devil_made_me_do_it

Sue, if it is an expensive drug, my PCT certainly won't be prescribing it, so I have probably heard wrong.

I'll know for sure next week when I see the social worker.

sarah*a

Sueinbirmingham wrote: »

Are they being treated by a variety of different health trusts, or all by the same one?

Clozapine isn't in the NICE guidelines for bipolar and it's very expensive, both in price per tablet and also because of the very frequent blood testing, by comparison with the far less frequent testing for other drugs. Valproate, for example, only needs annual testing.

The RCPsych recommend its use only after at least two other antipsychotics have been tried. It's a shame if any of its members are ignoring its guidelines.

AFAIK they are all under the same trust (in fact I think most are under the same pdoc ) They are all long, long, long term patients and have been on a variety of cocktails over the years.

I haven't got another sit down meeting until march but will ask some questions if I can and find out how they ended up on it

I was on Valproate and I was blood tested every three months - even when it was the only thing I was on - wish it had been annually as I hate needles

Sueinbirmingham

It's a lot more sensible being tested every three months, although I suppose it would depend on how your liver function is each time.

Clozapine certainly has a reputation of being very effective where other antipsychotics have failed. I never wanted to try it myself but some people have had their lives turned around by it. I tried eight antipsychotics before finding one that worked for me (on top of all the mood stabilisers and combinations thereof I've tried to go with it). You can get tired of trying different cocktails after a while. I've ended up with one that doesn't make me completely well but which has made me sufficiently functional to be let loose in the community. I may not be 100% but you should have met me five years ago!

From what I've read about the long term effects on the brain of repeat episodes of depression and mania, I'm a big believer in getting in there promptly when it becomes apparent that the problem is severe. I managed for a number of years without medication, though, and I have a friend who's been off his for four decades. He has his moments, but he manages reasonably ok. So I think whether someone should be on medication and if so which is very much an individual matter, because the way in which bipolar manifests itself in us and what triggers it for us varies so much from person to person.

Devil - you may have heard right. For all I know, I'm getting out of date with my knowledge. I checked the Nice guidelines and the RCPsych guidelines but I'm not au fait with the latest thinking on the ground.