Update on my situation and response to Acamprosate
Posted , 7 users are following.
Firstly, I have been absent for a while, not least because my laptop finally called it a day and I've had to get a new one.
Seconadly, I want to thank Joanna (C3Europe) and Paul Turner for their advice during this difficult spelll. Paul, if I had felt able to travel to Birmingham from Belfast, I would do so.
My problem has been regular, moderate drinking interspersed with severe binges, which have left me hospitalised on several times. I tried rehab last-summer, and the break from drinking probably saved my life, but the completete emphasis on religion, spirituality and meditation wasn't for me - the boredom associated witgh it just caused my mind to over-tick more.
I then had a period of relatiove stability, and then there was a trigger, the last two weeks of August 2016 are a blur, and then I stablised again for a couple of months. Then something went wrong at the end of October, and the vicious cricle reformed.
I began to get desperate to be prescribed anti-cravings medications to try The Sinclair Method, but none of the GPs in the practice I belkong to know about tghe meds and said they wouldn't prescribe them. I liaised with the NHS Community Addictions Team. They said that the GP could prescribe Selincro, but only they (Addictions) could prescribe Naltrexone and then only once abstinent (but with no timesacle on what abstinent meant).
I had to go to hospital for an apparently non-related matter just before Christmas - blinding headache, disorientation and severe high blood pressure - but, after thorough investigations, said to forget about alcohol on this occasion and that the spontaneous and eunexplained headache was probably the explanation for the very high blood pressure, which then settled.
Christmas and thew New Year were then very difficult due to recent bearevements and family disputes, but relatively uneventful. I should not have been drinking, but was, modestly, with food, but had noticed that my gastritis/GERD was playing up, somehthing that long-preceds alcohol problems.
One evening, I had a sudden urge to vomit and the vomit was essentially liquid, interspersed with what looked like grinds of coffee beans. Alarm signals went off, I rang 999, they sent an ambulanmce, and I was brought to hospital. They said I had had a minor upper GI bleed due to gastritis and needed to ensure that I took my Ompeprzole and, if I had to drink, to do it with food and not on an empty stomach. I raised the issue again, in hospital, of anti-cravings medications, and they said it was a matter for the GP and Addictions'Team.
So, I went to see the GPO, and basically pleaded with him to give me something. He said the only one he knew about and had prescribed to patients was Acamprosate/Campral, so he put me on that.
I have now been on it for three complete weeks and, if anything, think it is making me feel worse: constant headache, tired eyes, fatigiued but with insomnia and no energy (a vicious circle), and, not surprisingly, gastro-intestinal problems and bowel urgency. I also feel quite apathetic, irritable and as if I'm on a short fuse.
I aklso had a futher minor blled two weeks ago, because I had had a flare-up of IBS and not collected my Omeprazole prescription, and paid the price. The doctor said it was much worse thasn it looked and my heamoglobin/blood count was excellent, so it was scary but he wasn't concernewd. He also said all of the other blood/liver tests were either completely normal or better than the general population's.
I have been completely compliant and not missed a dose. Are these symptoms likely to wear off and am I likely to feel positive effects?
I am still seeing an Addictions' counsellor in the community once-fortnightly, andshe keeps takking about Naltrexone, but says abstinence must come first, whioch is not how the Sinclair Method works but seems to be how the NHS does, but she wouldn't define abstinence in terms of time. I pressed her on whether using it as a goal of abstinence was permissable, and she sxaid "No".
Do those of you who have experience of using Acamprosate know if I'm likely to improve on it, or how it works, or what?
Any drinking for now is minimal -I'm sure if I went backl to Addictions' and said I wasn't drinking, blood tests would probably indicate that (they have never been way-off anyway - the worst Gamma GT has been undeer 150 and evertything else has always been in normal ranges or returned to them quickly). I'm not making excuses because I know how destructive this all is and preventing a normal, functioning life, but the drinking has been sporadic - heavy has meant heavy, but sporadic but with big breaks of nothing or little in-between). In fact, when I told the Addictions' counsellor about no spirits for ages, just beer or cider with food, she thought it was good progress - until I mentioned the stale upper GI bleeds.
Any thought, folks. Cheers.
0 likes, 16 replies
RHGB gav44887
Posted
The main cause of gastritis is excessive alcohol use. You should be taking your omeprazole daily.
I am not a great believer in soley relying on blood tests and personal experience has shown me that they can look fine, when not all is well. I think that your health problems are down to other issues and anyone with Upper GI bleeds should really be having an endoscopy.
I will leave Joanna to advise you about how to get Selincro and why you will struggle to get naltrexone.
vickylou RHGB
Posted
You beat me to it!
Am glad to read that the info I gave gav was right, namely that it's pointless drinking whilst taking campral because it won't work, so why bother taking it. I was thinking he may have been given wrong information, but the patient information leaflet which comes with the tablets gives instructions on how to take them
lisaloves gav44887
Posted
Hi
I don't have any experience of Acamprosate sorry, but re your other query,
I tried to get Naltrexone, but you can't even on a private script until 14 days abstinent - I got Nalmefrene privately which is the Sinclair method as helps you to cut down. Not cheap from online pharmacy but hoping it's the tool in the box which will help.
I'm on lanzoprazole too - you def need to keep doing that daily to keep it under control, hope you get stable & sorted xx
vickylou gav44887
Posted
Welcome back gav, long time no see!
Firstly I'm sorry youve had to experience the gp/arc/addaction merry go round
you are certainly not alone, a lot of us on here, particularly RHGB a member on this forum. He's the 'how to get campral' expert, if you look at his posts from last year, you'll see the lengths he had to go to to get it.
I was on campral for 12 months and am happy to say it worked for me and also RHGB. I certainly suffered no side effects and I don't think RHGB did either.
you are taking 2 tablets three times a day right? The first week I felt nothing, couldn't even tell I was taking them.
Its quite hard to explain what happened next. But during the first part of the second week that I suddenly realised I'd not thought of wanting a drink all morning, it was starting to work. By the end of the second week, I wasn't thinking about alcohol at all.
there were a couple of times, particularly sitting outside a pub in the summer, but it soon past.
Are you drinking whilst taking campral? The idea of taking campral, is to stop the brain thinking it craves alcohol. Whilst I am sure drinking with campral won't harm you, unlike Antabuse, the idea is that you abstain from alcohol. IMO, continuing to drink renders the drug pointless. You've gone to great lengths to obtain the drug, so why not take the tablets properly and give them a chance to work.
dont hesitate to ask if you want to know anything else and I'm sure RHGB will reply with more detail later
vickylou gav44887
Posted
vickylou gav44887
Posted
Gav,mat least your counsellor has heard of TSM, mine hadn't, nor had the senior counsellor!!
gav44887
Posted
Folks, thank you for your replies. I am sorry about the spelling mistakes in my original post - big fingers and an I-Phone screen's key-board are not an easy combination.
I have had Gastritis/GERD for 15-20 years, basically producing too much stomach acid. Now, I have drank alcohol socially - sometimes too much - since I was 18, but the gastritis, etc, wasn't put down to that.
I had an OGD last September, and those conducting it said that my insides were basically as they were when I had the previous OGD and Gastritis, etc, was prescribed 15-20 years' ago.
I have also long had episodes of IBS. My GP warned me that Acamprosate, in someone with gastritis, IBS, etc, is more than likely to aggravate those things, but should settle.
My alcohol consumption while on Acamprosate has been modest, seriously, but the occasionally binges of the past18 months and me being 48, not 28, have obviously taken their toll.
I saw the Addictions' Counsellor last Wednesday. She again brought-up Naltrexone, not me, but also said you have to be abstinent but woukn't time-frame that, which seems pretty pointless to me.
I feel that all Acamprosate has done, so is worsen gastritis, IBS, diarrhoea, insomnia and irritability, but then that could also be to much less and often no alcohol in my system.
I don't know where this is all going to go - time will tell. Take care all.
vickylou gav44887
Posted
Gav
Does your addiction counsellor know you're still drinking g whilst taking campral?
You know that campral won't work whilst you're still drinking. As I said before, why not give campral a chance to work? I'm sure that if you stick to 2 tablets, 3 times a day and no alcohol, I'm sure you will see a difference .
Unfortunately there isn't a magic pill. All require effort from you
Misssy2 gav44887
Posted
Yea, alcohol causes so much damage and as we get older the damage just gets worse.
The Campral...I was on it and it really helped me with cravings. I did not even think of drinking when I was taking it...so then I stopped taking it and had a craving and took it that day...but drank anyway.
I think that the whole point of Campral is for it to halt your cravings and if the Campral is not doing that for you than it obviously is not working for you.
It sounds like you need one of the other drugs they talk about with the Sinclair method.
its nice to see a familiar name when I log on to Patient UK..but sad to hear that this is not a success story.
I come to Patient when I am low and thinking about drinking to read how other people are struggling and it helps to remind me that drinking should not be an option for me because of all the health problems drinking causes.
You certainly have a long list of health concerns that would be arrested for the most part if you could keep down the drink.
But, no one knows better than me that saying keep down the drink is easier said than done.
I wish you the best and never stop trying. I would just tell them I was abstinent for 2 weeks to get my hands on the Naltraxone...your in a desperate situation and it calls for desperate measures.
You will be in my thoughts today...keep posting your journey.
gav44887 Misssy2
Posted
Rhank you, Missy,
This weehas got worse and worse, even though my alcohol consumption - has reduced, not stopped - while on Campral.
I have co-morbid problems, of anxiety, insomnia and depression. Unfortunately, all of these have got worse on Campral. I woke-up (sleep is totally lacing) the night before last hugging my dead aunt - it was a nightmare, but you can imagine how it made me feel.
I was honest with my doctor today about all of this - thjis is really a problem of the past 18 months and especially the last ten months, but, while I am "only" 48 and it has not been going on for even a year, I feel this is going to be the death of me. It is truly frightening.
vickylou gav44887
Posted
Hi Gav
i'm not a medical professional, so I can only give you my experience and advice.
campral doesn't have any real side effects, and as has previously been said by myself and RHGB, the campral won't work whilst you continue to drink, even small amounts of alcohol.
personally I think the symptoms you're describing aren't down to campral and as you yourself said these problems were going on before you started campral.
What did your gp say today about you still drinking with campral. As you were totally honest with him? Did he explain why drinking with campral isn't helping?
campral, when taken correctly does prevent cravings. I'd suggest giving campral a proper chance, without alcohol. If you still feel the same, then maybe talk to your alcohol counsellor about trying naltrexone. Campral should leave you abstainant, so you'd fulfill your counsellors requirements.
RHGB gav44887
Posted
"I have co-morbid problems, of anxiety, insomnia and depression. Unfortunately, all of these have got worse on Campral."
None of which are down to Campral. All are down to alcohol, or rather redued intake.
Like any drug, alcohol affects the brain. It is a relaxant (anxiety), it reduces brain activity (therefore insommnia) and depresses brain activity (depressant).
The fact that you are now coming off this drug (alcohol) means these other factors are rising to the surface. Your have to deal with these individually, Campral is not to blame, alcohol is.
vickylou gav44887
Posted
RHGB has explained that a lot of your ailments are due to alcohol. By not drinking as much, you can no longer block them out. Maybe seeing a counsellor might help you address these issues. Something is making you drink, so try something like CBT and work through your issues
gav44887
Posted
Campral is simply not working and I AM troubled by the side-effects: I already have gastritis and IBS, and Campral aggravates them. My alcohol consumption is a lot less than it was, but it's still in control of me rather than the other way round.
I am going to have to resort to buying Naltrexone online, clearly from abroad (it seems strange that I should have to do that as you can buy, for example, prescription-only sleeping pills online and sourced from the UK and they are controlled drugs - Naltrexone isn't).
Happy Easter everybody.
Misssy2 gav44887
Posted
that stinks gav...Campral did really reduce my cravings but I also drank while taking Campral.
I think if you are still struggling it is good that you have ordered Naltraxone..at least you haven't given up and you are still reaching out.
gav44887 Misssy2
Posted
When I pleaded with and persuaded my sympathetic GP to prescribe Acamprosate, he indicated that I might be troubled by the main side-effect (diarrhoea), which is also listed as very common on the patient leaflet. Of course, I was.
When I stopped taking it for a while, the diarrhoea reduced (though the drinking went back up).
At least any recent drinking has been cider rather than hard-stuff, though I'm still going-through plenty of Gaviscon!
I've found a couple of websites that sell Naltrexone at good prices, but which are clearly genuine from the reviews, so will give it a go and, as I'm not working and won't drive, will follow The Sinclair Method on a daily basis for a good period and see how it goes.
As I said in my last contribution, I am sick of alcohol controlling me rather than the other way round and, much as it would be nice to go back to the way things used to be, I'm not really drinking for the taste any more, so, if I need to gradually phase it out to get back in control of my life again, so be it.
By the way, I take a prescribed sleeping tablet so hopefully insomnia won't be a great problem and, remarkably, while my Gamma GT reading is modestly above normal, all the other LFTs are well within range, and I figure that Naltrexone is rather less likely to harm my liver than drinking to excess for perhaps years to come.
Cheers.