Dipipanone and Cyclizine

[Danni54]

Hi all. I was prescribed Dipipanone and Cyclizine when it was called Diconal. I had lung cancer and a Lobectomy 5 year's ago and because our hospital ignored an Xray of the tumour on my lung for 15 month's I have been left with multiple health problems which have left me with awful pain. 1 problem is Diverticulitis, then a 10 cm sliding hiatus hernia also 2 fractured vertebrae at the base of my spine. Scotland have now banned the prescribing of Dipipanone and Cyclizine and it was stopped abruptly which means thatbi am now going through withdrawal which has been horrendous! Has this happened to anybody else? If so, how are you coping? The pain back and front is awful despite being given Oramorph which I hate and it doesn't help much. It is so kind of the Pharma Company who hiked up the price of Dipipanone to ridiculous levels that the NHS can no longer afford to buy Dipipanone any more. The 2 brother's don't care about the pain that we are in because they are now multimillionaire 's ! Government's need to stop being so scared of these companies and they should find a way of fighting back. If anybody has any advice for going through Opioid painkiller withdrawal I would be really grateful because it's been pretty bad. Thank you.Best wishes to all of you who are in chronic pain. I sympathise so much.

[Betsy50]

Hi danni54 sorry to hear your in so much pain. Now cyclizine I get for nausea what makes you think they dont prescribe it ? I was in morphine for 6 years and decided to come off it I wont deny it was very hard but I achieved with perseverance and it's the best thing I've ever done no more brain fog. I hope you get there if I can do it you can too. Take care n good luck

[Danni54 in reply to Betsy50]

Hi Betsy. Thank you so much for your reply and encouragement. I needed that! I have had 3 day's of muscle jerks from withdrawal from Dipipanone. I still get the Cyclizine but the Dipipanone is an Opioid and really hard to come off. Probably the same for you. Will write tomorrow as it's getting late. All the best,

Danni x

[Betsy50 in reply to Danni54]

Hi dani64 how are you today ? It took me 6 weeks to taper off morphine but I took paracetamol when I felt bad. I know it's hard but hold on in there it will be worth it in the end. Take care

[Danni54 in reply to Betsy50]

Hi Betsy. Thank you for caring. It really means a lot. Last night was pretty horrible again and I don't understand why the restless leg's and arm's start at night! Dipipanone and Cyclizine is an old Opioid painkiller and started out life as Diconal. Very addictive but we were never told how bad !I have had a lot of illness and operation's, the last one being Lung Cancer and they took out the top lobe of my right lung. They misdiagnosed the cancer and left me for a year and a half with the tumour on an Xray but didn't tell anybody so, no treatment! I have been left with multiple health problems including 2 fractured vertebrae, Diverticulitis +++. Then , my husband went to get my prescription for the Dipipanone and was told they didn't have any and the NHS wasn't going to get any more because they are too expensive. I know who to blame for that and Pharma companies should be ashamed of themselves....especially the one's who manufacture Dipipanone and Cyclizine but then , they are now multimillionaire 's ! To go from 1 day having your pain under some control but dependent to having nothing is so cruel.Anyway, the Dr has put me on 50 mg Cyclizine 3 times a day and 2 mg Oramorph twice a day and up to 5 mg at night. I hate this because the fracture pain is awful as is the Diverticulitis and adhesion pain and Oramorph doesn't help the same and makes me so tired. The Dr. wants me to come off the Cyclizine but I have read that I need to be weaned off that too. Is that right ? I hate Oramorph for making me feel so exhausted and ill.

So sorry to moan Betsy but I'm feeling so down today . I believe the Dr.s are having a meeting about me today. I just want the withdrawal to stop and the pain . I haven't got a life at the moment and haven't had for quite a while. I hate this moaning, it's not me !

I really hope that you are alright and thank you so much for being there for me. My profile says a lot more about what I have been through. Thank you for your encouragement. Please take care.

All the very best,

Danni x

[Betsy50 in reply to Danni54]

Hi danni54 omg you poor soul cant believe everything you've been through and still are big hugs. Never apologise for talking about your pain myself and everyone on here totally understand and can relate to you it's only now I feel that people living with pain is being more highlighted and its took a very long time for this to happen !!! Living with chronic pain is very lonely no one in the household can take your pain away and feel helpless so it's good to talk to people who actually live it and can listen to each other it helps. I've had back surgery in 1999 discetomy on L5 was an emergency due to cauda equine syndrome I blame the idiot of an orthopedic I attended never sent me for an mri scan over an 8 year period until it was to late then rushed me private to ross hall I was only 29 when I had my operation and now on meds for my bowels for life but I've learned to live with that. Recently been told I have fibromyalgia but I believe I've got osteoporosis bern waiting on a dexascan for 3 years !!! Keep breaking bones so easily. I've had sciatica since my early 20s and still do and now piriformis which is so very sore. I've bought a sciatica cushion which seems to be helping wish I had found it sooner. Enough about me I could go on and on lol you free to send message anytime and you know i take my hat off to you as you are alot stronger than you realise to be able to come through such traumatic experiences is just amazing so hang on in there you CAN do this take care x

[Danni54 in reply to Betsy50]

Hi Betsy. Just checking in to see how you are. I was up for most of last night with restless leg's and arm's and the pain in my stomach and back is bad today so I've been in bed which, probably, means that I will be up tonight! I looked at my name here and saw aged 70 and that still shocks me! I'm so grateful to still be here and my head is not 70 .....I got stuck at 30 ! Weird! I hope you haven't had a bad day . I just wanted to let you know that I'm thinking of you. Will write more tomorrow. Take care.

Danni xx

[Betsy50 in reply to Danni54]

Hi danni I'm okay I get restless legs syndrome at night too it's awful like you up all night then sleep most of the day. Just heading back to dentist had got toot canal treatment but it's not worked to think I'm getting a tooth pulled soon !!! I'm off to canada early Wednesday morning and I cant wait got family there had to cancel last year due to a hip injury so bern a long wait lol. Hope you are well today tc spk sn x

[Danni54 in reply to Betsy50]

I wish that I could go with you to Canada! I have first Cousin's there but only met 1 of them once and he is like a big brother. His wife is so lovely and we email a lot. Have a lovely time there. If I lived anywhere else in the world it would be Canada...or the Greek island of Paxos !Good luck with the dentist! I hate going and why do we have to go through that torture?! I will be thinking of you. Enjoy Canada and try to put the awful stuff you are going through here to one side, if you can and enjoy your family.

All the best and safe travels,

Danni x

[wendythom]

Hi Danni - I too have taken Dipipanone long term. It is not being made at present hence the lack of pills. I have been prescribed tapentadol 25mg instead but it is such a low dosage it doesn't touch the pain. I am going to see a pain specialist for advice I think. I don't feel that I was addicted but certainly dependent on dipipanone, and it really worked. I was on a low dose though, so maybe that is why I don't have withdrawal issues. The price increase for diconal was mad. I hope you feel better soon.