I’ve recently been diagnosed with neuropathy by my neurologist (over the phone due to the COVID-19 situation) who said chemo/radiotherapy is the cause. I get a burning sensation in both feet and pain in my left foot. She has/is writing to my GP requesting a prescription for amitriptyline/gabapentin/ pregabalin. Not sure whether I should phone my GP or wait to hear from them but I was wondering if anyone has personal experience of these meds as I’m worried about side effects, particularly drowsiness as I suffer terrible fatigue at times.
Tia 😘
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SpaghettiBetty
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I’m a pain nurse specialist and a prescriber as well as someone who has neuropathy and PRD but obviously none of this information replaces your doctors advice and guidance and obviously which medication and dose your doctor chooses will depend on your own personal circumstances such as kidney function, medical history etc.
So to answer your question, any of these medications can cause sleepiness as a side effect due to how they work.
With pregabalin and gabapentin which are anti-epileptic medications originally the sedation can be minimised by starting very low e.g 25mg twice a day for pregabalin or 100 mg three times a day for gabapentin and increasing slowly. Some people can also feel a bit dizzy or fuzzy headed but generally this should reduce the longer you are on it.
Amitriptyline which is traditionally an anti-depressant at higher doses (100mg +) is taken at night due to the sleepiness which is sometimes a positive if pain affects your sleep. Dose is usually between 10-50 mg. some people experience a hangover effect the next morning and this can settle after a couple of weeks but if it doesn’t there are alternatives that are less sedating such as nortriptyline or imipramine, both are also anti-depressants at higher doses and both are sane doses as amitriptyline.
The other positives of the anti-depresssant type medications are that they can help with bladder urgency and frequency as well as bowel pain.
There is also another anti-depressant medication which is really beneficial for peripheral neuropathy and bladder urgency and frequency which is called duloxetine, usual dose starts at 30 mg once a day and increases to 60 mg once a day after a couple of weeks
This is less sedating but some people get nausea with it which can be eased if you take it after food. Also the withdrawal is tough, if and when you come off it you need to do it very slowly.
Some other things that can help are topical menthol, ice packs, flip flops in freezer feel great, tens machines can help, some people benefit from reflexology and acupuncture but these can be expensive and aren’t available at the moment.
Night pain (and pain first thing in a morning) are an issue for me so this is great food for thought. I have a very good relationship with the doctors and nurses at my GP practice and they often ask my preference for things so having this information will enable me to have a more informed discussion with my GP/nurse practitioner.
I took gabapentin a few years ago for what the pain clinic called localised fibromyalgia (in the right side of my face) It did not help a lot and I was really spaced out by it. Stopped taking it after a few days as it made me feel "off the planet" . Acupuncture was also ineffective.
It was probably an idiosyncracy on my part, but a day or so after I stopped it I started singing again!! You have to try it and see I guess. I rang 111 on a Sunday afternoon and the GP who rang me back just advised me to discontinue it.
Pain disappeared after a long course of counselling at Network - a Christian counselling organisation in my home town. Coincidence? who knows! We are so individual in our responses that it is difficult to tell how we will react to a treatment. Talk to your own GP or friendly local pharmacist and see what they say. Best to be proactive on your own behalf - you matter as much as everybody else!
After a chat with a locum GP I mentioned the great advice from HarleyQuinn82 and they agreed with my decision to try amitriptyline. I’m awful at taking tablets regularly and much prefer taking things as and when I need them. I would really have struggled with feeling spaced out. Good to hear your pain went in the end jude-the-obscure 👍
So glad you got help from a locum GP to make a decision. Amitriptyline can be very helpful in small doses I know. Takes a while to experience the full beneficial effects however! "Hang in there".
I was prescribed Amitriptyline on my surgeon's advice to deal with nerve pain in my bum following treatment for rectal cancer. It had an almost immediate effect, and after a few weeks completely pain-free I thought I would see what happened if I stopped taking it. The pain did not come back (to my surgeon's surprise) and has not returned from that day to this. Amazing!
Really good that you had such instant relief from your pain. It can be so wearing to cope with constant or intermittent pain on a daily basis. Our community is growing - great to share with each other.
Really well thanks. My burning feet tend to come and go so having the option to take my Amitriptyline as-and-when is great!
I think I’ve used it 4 times since getting it although I’m bad for putting up with it for ages until I think to take my tablets, a bad habit I need to get out of! Thanks again for your fab advice 😘
Glad you’re doing better and the medication is helping! Be kind to yourself when it comes to your pain and always ask yourself what you would say if it was someone you loved in the same situation 🥰 We are often much more compassionate to others than we are ourselves 😞
Hi there. My experience with Gabapentin (Pregablin) was very bad. It is highly addictive and basically ‘stuns’ the system. It left me feeling like a zombie and the final straw was when I lost control of the car when I had my 2 young daughters in the car. I had to be driven home by my friend and my partner collected the car the next day. How I managed to a) not damage my car and b) not kill myself and my girls was a miracle. It took me many months to ‘wean’ myself off them. NEVER AGAIN.
My experience with Amytryptiline is much better. I was scared to try it after the Gabapentin/Pregablin experience but fingers crossed 🤞 it has help me greatly particularly with sleep. Currently on 30mg and I understand the maximum dose is 75mg. As I’m on Sertraline as well it’s a safe dose for me.
Honestly I would steer clear of Gabapentin and try the Amytryptiline. There has been a lot of articles written about Gabapentin/Pregablin and I watched a documentary on it too a few year ago. There was nothing good written about it because of its addictive effect. Check online about it and don’t be bullied into taking it. It’s such a bad drug that black market sales are high for drug addicts. In the wrong hands it’s not good. When I was weaning myself off it I can still remember how sick it made me and how apparently I was told it was like watching someone doing cold turkey.
Don’t take my word for it research online and speak to your GP at length. Don’t get fobbed off.
I wish you lots of luck and hope this helps you make the right decision for you. I’m sending happy and positive vibes 🌞
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