This topic contains 15 replies, has 4 voices, and was last updated by 
petesilver 9 years, 12 months ago.
Hallo all. Just wondering if anyone has experience of stopping taking Gabapentin. I was prescribed this about 15 months ago by my MacMillan nurse for a severe nerve pain under my ribs at the same time as Morphine for collapsed vertebra. Worked well, immediately. Last month my consultant suggested stopping it to see if I still needed it. I did this over some 10 -12 days, realising that it needed tapering off = note no warning of this from the consultant !! I rapidly developed sweating ( hot flushes ?) fuzzy head, tintinitus, very low energy levels ( annoying as this had been good previously ) and generally not feeling good.It got so bad that I have restarted taking the tablets yesterday, with an immediate improvement. If you have been through stopping Gabapentin, how did you deal with it? I searched the internet, really scary !!! Jeff
Jeff not sure if this is related. My husband was prescribed Pregabalin for pain after a bout of shingles. His consultant told him not to stop them unless he discussed it with her. She said he would have to be weaned off them. He got up yesterday and felt terrible (he’s been feeling good for some time). He said he was feeling so weird and no energy. Then he remembered that he had not taken the tablets the night before. He took it went to bed for a few hours and was feeling great when he got up. He said he was going to discuss coming off them at next appointment. Maybe bot a good idea
Hope you feel better soon
Jean
Hi, Jean. Thanks for the interest. Certainly sounds much the same. Fortunately, the effect of taking the first tablet was so rapid it was unbelievable ! Within minutes I was much improved all round, the sweating stopped almost instantly, and the other effects within half an hour. I am now back on the full 300mg x 3 times a day, and feel what’s normal for me, except my back is a bit sorer than it was, but that’s another story ! So, I’ve booked an appointment with my GP ( who fortunately is a good one, he spotted my Myeloma early on ) to find out what I need to do to come off the Gabapentin safely, and to minimise the side effects.
Best wishes to you both, Jeff
Jeff Frank takes the tablets twice a day and they are 75mg. He had horrendous pain from and after the shingles. He said he felt like a gorilla was crushing every bone in his body. Once he started the tablets he felt a lot better but still gets some pain but not as bad as what it was. Consultant said months ago he could have this pain for some time (pain coming from nerve endings). I hope you get it sorted and let me know how you get on as Frank is determined to try and get of his
Regards
Jean
Hallo Jean, I had a mild attack of shingles some years ago centred on an area of my chest. The residual pain from this did last a long while after the shingles had run it’s course. Frank certainly has my sympathy, although I can’t really imagine what he must be going through. It’s a difficult decision equating pain relief against ” normal ” living and putting up with pain and discomfort. I have had to decide against increasing my morphine to alleviate my pain from two collapsed vertebra, and having to stop driving due to suddenly having very short blank spells, against putting up with a bit of pain and not being able to walk very far, but being able to drive. Really, it’s a decision that only the person involved can make. I can quite understand why Frank wants to stop taking any drugs he can.
All the best wishes to you both, Jeff
Hi Jeff,
I’ve been using fentanyl patches since my vertebra collapsed some four years ago. Overall, the medication has worked well to reduce my back and rib pain, but initially had to be supplemented by tramadol tablets every day. Like you, I’ve had similar discussions with my consultant and GP about trying to reduce the dose of my painkillers. Over the past two years, I have managed to reduce the tramadol tablets without much side effects. However, trying to reduce the fentanyl patches has proved far more difficult. I have tried on numerous occasions to slowly reduce the dose, which has left me experiencing some serious withdrawal side effects such as sweating, flu like symptoms, headaches, low energy, achiness, shaking and generally feeling awful. After a couple of weeks, I’ve had to return to the original dose.
I must admit that I’ve backed out of trying to reduce the dose again, but like you I think I need to obtain some more advice from my consultant and GP about managing the withdrawal symptoms to see whether there is any professional help or alternative drugs to encourage reducing the daily pain killers. In the US and Europe, there are professional clinics to help individuals stop their pain killers.
Regards Jan
Hallo Jan thanks for the interesting reply. Very similar withdrawal effects to those I had. It’s quite worrying to think that there may be no alternative other than to have to endure these side effects, even more so as there is no telling how long they may last. I wandered onto an American druggies internet site, they use Gabapentin to enhance highs, and they were talking about months on “cold turkey” withdrawal !! As said before I am seeing my GP soon to discuss this, and will also talk to the consultant next appointment. One thing for sure, I don’t intend to stop on painkillers forever, so will have to find out exactly what the withdrawal situation is – if anyone knows. But until I do find out more, I don’t intend to stop taking the full dose again.
Thanks again, I will report back anything I do find out, Best Wishes, Jeff
Hi Jeff
I would certainly like to reduce my painkillers, although I realise that I cannot manage without some type of pain relief due to the pain around my vertebrae especially when I am tired or have carried out too many tasks during the day. I still have to regularly sit down to relieve back pain. I would love to be able to sleep on my front, but back pain will not allow me to sleep in this position. It has taken over two years for me to be able to sleep on my side without back pain following the collapsed vertebrae. Therefore, I know I need some pain relief, but it’s adjusting the dose to an amount which does not cause the common side effects associated with the medication. The fentanyl patches do a very good job of providing constant medication over three days, rather than the ups and downs of pain relief tablets which last for short term periods of 4 – 6 hours. At present my three day fentanyl patches can cause itching on the first day of application as a common allergic reaction to the glue in the patch, with extra energy during the daytime but a sleepless/restless night as my mind goes into overdrive. The second day is OK, but on the third day my back pain starts to resume, with less energy and restless legs towards the end of the day. Constipation is also a regular battle with pain killers.
Perhaps you can ask your consultant/GP about how much medication you should reduce and over what period of time. When I first tried to reduce my fentanyl patches, I decided to order patches with 50% less dose. Unfortunately, a 50% reduction was too drastic resulting in severe withdrawal symptoms. I only lasted three to four days before resuming my usual dose. On my second, third and fourth attempts to reduce the dose, I tried a 25% reduction but again the side effects were not pleasant, but I did last around 7 days before resuming my usual dose. There is no way in which I could consider “cold turkey”. Apparently the specialist clinics in Europe and USA offer alternative substitute drugs to help wean you off the painkillers more easily. Personally, I have come to the conclusion that I need to very slowly reduce the dose by perhaps 5 – 10% and take more time to allow my body to become used to the reduced dose before attempting further reductions.
Good luck with your discussions and let me know what happens when you attempt to reduce your painkillers again.
Regards Jan
Hi, Jan, just an update on the painkiller situation. Since last posting, I have had a bad problem with what appears to be arthritis of my spine up the top. This caused intense headaches and a very stiff painful neck – could move my head about 1/2 inch in any direction. So, my GP has actually increased the Gabapentin dose !!! I’m not sure how much good this is doing, it’s come back with a vengeance the last couple of days. As I am due for a Vertobroplasty op. on Monday this is causing me some concern, in case it stops the op. from being carried out. I’ve got a stoma following an emergency operation a short while ago, trying to deal with that when you can’t move your head using a mirror is great fun !! Incidently , I was a couple of hours late taking my meds this morning, and had a sweating attack.
So, I think it’s back to the GP to see if things can be improved. Whether I will be able to reduce the pain killer dosage as I hoped after the vertobroplasty, I’m not too sure now. Have you tried reducing your doses at all again ?
Hi Jeff,
I hope your operation on Monday goes OK and offers you some relief in your pain. I’m so sorry to read about your arthritis. Last year, my elderly father suddenly started to lose his mobility. Eventually after nearly nine months of investigations, scans, tests/MRI, he was diagnosed with arthritis in his lower spine which appears to cause him pain down both legs. The bones in his central spine have slipped causing pressure on the central nerves running within the spine, hence he gets quite a lot of pain. His pain killers have been steadily increased and he now seems to manage on 4 hourly medication. However, he appears to suffer no side effects with his tramadol and co-codamol pain killers.
For the last six months, I’ve been taking my dad to see his GP and consultants on a regular basis and home life has also been hectic with two sons organising rental accommodation for a year with their different jobs. Therefore, I haven’t managed to concentrate on reducing my fentanyl patches again. I have tried to reduce my tramadol tablets, but the bone pain increases and like you, I then tend to suffer with sweating. However, my light chains are slowly increasing again and part of my original myeloma symptoms were hot flushes and sweating for a couple of years before my myeloma was diagnosed.
All the best for Monday.
Regards
Jan
Jan, Well, the op didn’t go ahead due to my not stopping taking an anti blood clotting drug – no one told me despite me phoning in to check – which might have caused undetectable bleeding post op. Every one very apologetic, and they have booked me in a fortnight today. Has put my commitment to not getting stressed by such things that I started when all the treatments etc started, under a bit of a strain to say the least ! The neck pain/stiffness is slowly decreasing, which is good news.
Sorry to hear of your Dad’s back problems, sounds very painful. Pleased he is managing to control things with the meds. Talking of which, as said, my GP suggested increasing the Gabapentin to two tabs 3 times a day, which seem to be causing extreme tiredness through the day, so I may need to revisit this, as it’s difficult to carry out normal day to day tasks. Also, I seem to be reacting to the quick acting Morphine, causing heavy sweating for up to 3/4 hour. One of the first symptoms of Myeloma that took me to the doctors was night sweats and flushes. As with you, other family problems such as my middle daughter having had what is essentially a stroke have kept me busy and distracted me from following up things relating to myself. So, I’ll try again in two weeks time
Thanks for the kind thoughts regarding the op. look after yourself, Jeff
Hi Jeff
I can’t make up my mind about gabapentin, I have been taking it for several years following shingles and sciatic nerve damage, but lately it has been giving me some bad side effects one is muscle spasm in my hands and neck especially at night which prevents me sleeping if I stop so do the shakes so I haven’t taken it now for a month only effect is my legs really ache but painkillers help with that, but I really don’t know what the answer is, I have tried morphine patches but they are just mind benders and cause so more problems than they solve.
Peter
Hallo Peter, I’ve been taking Gabapentin for some 18 months and it has been very effective in completely eradicating the nerve pain under my ribs. Until I tried reducing it I had had no side effects at all. I posted the effects, sweating heavily, headaches, lethargy, and generally feeling out of it. Resuming the Gabapentin brought immediate relief. As I have said, increasing the dosage seems to have ” woken it up” and I will try to bring it back down to my original dose of 300mg 3 times a day. hopefully this will settle things down. I am also taking slow release Morphine capsule ( Zomorph ) 40mg twice a day, which apart from a brief sweat initially give me no problems. I also have liquid Morphine ( Oramorph ) for breakthrough pain which I seldom use. Did you get any withdrawal problems when you stopped the Gabapentin, Peter ? Other people seem to have problems with the patches, they seem to be harsher in their action than the oral versions. could you try the oral version ? I still drive with DVLA approval ok.
I am writing this drinking cocoa at the unearthly hour of 05.08 after waking up at 03.35 with a split stoma bag, causing bed linen change, pyjama change, carpet cleaning, bathroom floor and mat cleaning , load up the washing machine,great fun ! Trouble is you wake up discover the problem, panic and cause a lot of extra work. Still hopefully it’s not forever, should get the stoma reversed soon.
Well cocoa finished, I’ll try for a couple of hours sleep. Hope you can ease the pain problems Peter, they do so effect the quality of day to day life don’t they? Best wishes, Jeff
Hello Jeff
I had been taking Gabapentin for 5 years ever since I had a severe case of shingles which actually put me into hospital, however recently something has been causing me to get severe muscle spasms in my hands and upper body ( this is something I had before MM when taking Amitriptyline) as gaba is in the same mode I stopped taking and the spasms which I have always had on and off since the ami days though not as bad, I stopped the gabapentin with no bad side effects except my legs ache a lot more and a bit of backache.I do still take some pain killers Paracetmol/Tramadol which does help that, I have come a long way in reducing my dependence on pain killers as many of them have not good side effects.
When I left hospital after my last collapsed vertabrae I was taking quite a cocktail, MST morphine tablets, oramorph , Fentynyl Patches, but after a while realised I was living in another world, so I started to wean myself off of them but it took me many month as it caused cold turkey if I went to fast. I was told after I came off I was a different person although I did not realise it
My main problem is after the operation on vertebrae L5 my back is supported by a metal scaffold the damage to my sciatic nerve as well as the shingles still leaves my legs feeling painful, I have seen the surgeon who did the op but said he could go in and look be it could be made worse so I opted not to.
So for me the jury is out on Gabapentin on whether it helps or not,I know my consultant has his doubts
Regards
Peter
Peter, Hi, I am getting more and more convinced my present lethargy, sweating attacks and sleepiness are due to the increased dosage of Gabapentin, as that’s the only thing I’ve changed. I have started to reduce it at a slow rate. Just got my fingers crossed there are no nasty side effects as there were last time I tried. I will report back as to what happens
Jan, still trying to work out what to do about reducing the pain killers, I suppose I should do one thing at a time. The neck/head problem has considerably complicated things, it’s presence is quite persistant and invasive, although not too activity limiting, and the pain relief doesn’t seem to have much effect on it. I think it will be quite difficult to sort out what to do
Best wishes, Jeff
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