I have been through a lot of pain through the year's with multiple operation's and was put on Dipipanone and Cyclizine approx. 20 year's ago but they were stopped with no warning. I have had no positive help or support from the medical profession , was prescribed 60 mg Duloxetine and had 5 or 6 night's of no sleep with restless leg's and horrendous diarrhoea, told the Dr. I have not taken any more Duloxetine! I asked whether I needed iron,was told I wasn't anaemic but I had had a blood test and I am anaemic! Told the Dr. I couldn't take the Ferrous Fumarate but she prescribed it anyway. I have Fentanyl patches 12mcg and now have Oramorph 2.5 ml twice a day which doesn't touch my pain. I still don't know how much is safe to take because 1 Dr. has said that I can take 5 ml on top of the 2 , 2.5 ml. Does anybody know if this is O.K. as I don't trust medic's. I have Diverticulitis, adhesions, have had lung cancer and a Lobectomy, a 10cm sliding hiatus hernia ++. Pain just now is unbearable and I'm into my 5th week of Dipipanone withdrawal and my leg's still feel tight but the RLS has calmed down a bit since stopping the 60 mg Duloxetine. Any advice please? Am desperate!
No support for Dipipanone and Cyclizi... - Restless Legs Syn...
No support for Dipipanone and Cyclizine withdrawal.
Oramorph is liquid morphine and according to the Mayo Clinic Updated Algorithm on RLS the usual effective dose of morphine is 15 to 45 mg. I don't know about also using to fentanyl patch with that. And if you are still withdrawing from Dipipanone and Cyclizine that adds to it. You might want to ask your pharmacist.
If you are anemic then your ferritin is probably very low. Do you know what it is? You probably need an iron infusion to bring it up. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.
Hi Sue. Thank you for replying. I don't know my ferritin level but hope to speak to a Dr. tomorrow...if I'm lucky! I will ask him. They did give me Ferrous Fumarate but they hurt my stomach badly. Do you know of an alternative to that? Hopefully the Dr. will but I have lost all faith in medic's! I had read that being anaemic can contribute to RLS so thank you for that and I will let you know what he says tomorrow. All the best,
Danni
Better iron supplement is ferrous bisglycinate chelate also called gentle iron. It's a patented formula - so any brand is the same but some have different strengths. Taken once a day or every other day on an empty stomach w/vitamin c or orange juice is the protocol. Ferrous bisglycinate is non constipating and if you still have gastro problems it is available as a patch from Patch MD.
Hi Dic. Wow ! Thank you SO much for that information. I haven't heard of that iron supplement but I will speak to the Dr. tomorrow and hope that he will , actually, listen to me. A rare occurance these day's! I have Diverticulitis, a " massive" hernia , adhesions and IBS so my stomach is incredibly sensitive and I'm exhausted. Thank you again. The support on these forum's is amazing and I had so much help and support from the lung cancer forum so I am so grateful for your help and advice.
All the best,
Danni
I agree with DicCarson - ferrous bisglycinate is good if you are having stomach problems. take two tablets of 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Hi Sue. Thank you again for all of that information which I am going to print. I do have an Underactive thyroid so I take 100 mg Thyroxine on an empty stomach with water and I also take Lansoprazole for bad reflux. I take that first thing in the morning and the Thyroxine 2 hour's later. Why don't the Dr.s tell us any of the information you and DicCarson have told me ? I fought through the Endometriosis and the cancer but what I am going through now is just horrible and I'm exhausted. Thank you again. I hope you are feeling alright. Take care.
Best wishes,
Danni
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Hi Sue. Thank you so much for all of your help and advice. I don't drink, don't smoke and don't take any OTC supplements. I explained to Chris a bit of what has been going on with me but I will read more of your advice tomorrow and write back as I had to get up because of my leg's and it's after midnight here so a bit past what used to be my bedtime! I need to walk around a bit or go and climb a mountain! I hope that you are alright. More later! Thank you again.
All the best,
Danni
You'll probably have read this, from NICE, which assumes advice from your prescriber (it's shocking if you haven't had advice): "Dipipanone/Cyclizine Tablets: Do not suddenly stop taking this medicine. If you want to stop taking this medicine, discuss this with your prescriber first. They will tell you how to do this, usually by reducing the dose gradually so that any unpleasant withdrawal effects are kept to a minimum. Withdrawal symptoms such as yawning, dilated pupils, tears, a runny nose, sneezing, muscle tremors, weakness, anxiety, irritability, agitation, feeling your heartbeat (palpitations), increased blood pressure, difficulty sleeping, shaking, restlessness, decreased appetite, weight loss, feeling or being sick, diarrhoea, dehydration, an increase in white blood cells, bone pain, stomach pain and cramps, "goose pimples", increased heart rate, breathing rate, blood pressure and temperature, shivering or sweating may occur if you suddenly stop taking this medicine."
Hi. Thank you for that and yes I have read that. I have been on them, occasionally, for 15 year's but when I had lung cancer and was left for 15 month's with the tumour on an Xray but nobody was told, so no treatment for 15 month's , I had terrible pain and took the Dipipanone 3 times a day for the past 5 year's. All in my profile and too long a story to put here. Then , the Pharma Company who supplied Dipipanone and Cyclizine decided to increase the cost of 50 pill's from £ 9.95 to over £500 which the NHS can't afford! I won't swear! However, those of us on it were given no warning that it was being stopped and when my husband went to pick up my prescription he was told none of the Chemist's stocked it any more. No programme was put in place for us going into withdrawal and I'm not the only one here who has been left to suffer. Thank you for taking the time to reply . I really appreciate it. Sorry for ranting a bit but the pain I'm in from 2 fractured vertebrae and the stomach problems is excruciating and now to go through this is just cruel!
Take care please and I wish you all the best.
Danni
While you've been let down by the lack of support for withdrawal from Dipipanone with Cyclizine, I think that you have to take the doctor's advice on increasing the dose of oramorph.Best wishes
I'm so sorry you are suffering and empathise. I take 12.5mls of oramorph for RLS and this is a low dose. I don't think that 2.5mls would do anything for either pain or RLS. I have used it for both.Huge good luck. Hang on in there.Things will get better.
I so empathise with your name ! Thank you so much for replying so quickly. I find the dosage details really confusing so wasn't sure what to do so thank you for telling me that. You are quite right in that 2.5 ml twice a day or 3 times does absolutely nothing for the pain or RLS and both are the worst they have ever been although the RLS is a bit better since stopping the 60 ml Duloxetine. Saying that , I can't remember when I last slept properly! I'm beginning to get depressed so I really hope that you are right and that thing's get better! The support here means so much. Thank you. Hoping that you aren't feeling too awful!Very best wishes,
Danni x
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