Long Term Neuropathic Pain: I had a brain tumour... - Headway

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Long Term Neuropathic Pain

Shintydaft profile image
Shintydaft

I had a brain tumour removed almost 1 year ago where the incision was across the top of my head.

I have been on Gabapentin for the last 5 months trying to manage the neuropathic pain that is making life challenging.

Anyone else experienced such long term issues and can offer any advice.

Thanks

10 Replies

I really wish I could recommend something

I have been on "pain killers" since 2005 and they have long lost their potency (much like me!)

You may be able to switch from Gabapentin to another equivalent to take with other pain medicine.

Some people get benefits from CBD oil. It didn't work for me. If you did want to try it, I would check with your doctor / pharmacist if it would be suitable.

Shintydaft profile image
Shintydaft in reply to sospan

I hadn't considered ant CBD products.

If I am unable to control things with Gabapentin it's maybe something I will look into.

I am also going to look at some of the techniques in the books that Driad had suggested to see it these help also.

I guess it's just a journey of trying to find out what will work for me.

I was blessed with meeting a NHS pharmacist consultant 2.5 years in from BI and still suffer with intractable pain (he retired 6 months later, unrelated ;). He helped to reduce my meds slowly and now 4 years on I'm on slow release Tramadol and naproxyn x2 per day.

Now his and my opinion was that the way the NHS deal with chronic pain is to carry on increasing the dose or strength of meds, all the way to the top, fentanol and other morphine based drugs.

I was on that up hill climb on pregabalin, another strong and addictive opioid. And as you know it messes up your brain! And actually does more harm than good.

Fact:there's no such thing as a 'pain killer'

Fact: all pain is in the brain

Fact: you can change the relationship with the pain by changing your relationship with the brain.

My advice is:

#1 to contact a NHS pain clinic, most areas have a specialist chronic pain team, but if they recommend increasing dosage or stronger meds, walk away! And seek out a supportive expert who works with you.

#2 go online right now! paintoolkit.org buy the small booklet written by Pete Moore, read his story I thinks it's about a tenner (if you're struggling PM me and I'll send you a copy 😉. This and the will and want to change WILL change your relationship with pain!

#3 buy and read this book; Living well with pain and illness by Vidyamala Burch.

A weightier book but extremely helpful with every page! I've still not read it all 😏

I am positive that if you are positive and follow those 3 things your life will improve, as they did mine.

But... 4 years after the RTA that caused my BI and broke so so many bones, I'm not pain free and perhaps will never truly be but, with the above help, I am HAPPY and at ease with my body and brain (most of the time).

Hopefully this helps and improves your journey, let me know if I can be of any more help.

Driad profile image
Driad in reply to Driad

CBD didn't do anything for me either, annabis many good testimony from MS and Cancer patients.

But...dare I say it...the reason why cannabis is becoming legal in lots of states in the USA and Europe is because it is one of the best natural medicines, if we can put all these years of negative propaganda behind us...Shintydaft, I bought a cannabis vape and use it sparingly, only when it gets too much, and it works for me!

Iisten...I am thoroughly focused on having a healthy brain and body, like you a keen cyclist and gym goer, I don't drink alcohol,smoke tobacco and I am vegan.

Everything in moderation.

Shintydaft profile image
Shintydaft in reply to Driad

Hi Driad,

thanks for the feedback :-)

I have downloaded The Pain Toolkit pamphlet and will start my journey from there.

I read the reviews on the other book you recommend and will maybe give that a go once I am read the 1st one.

I'll let you know how I get on

I had a brain bleed in April of2013. In September of 2013 they did Gamma Knife surgery on me. That’s really when all head pain got worse. I have been on Gabapentin for several years. They tried several different meds before this one gave me enough relief to be able to live life not just rolled up in a ball on the sofa. Originally I was taking 600mg three times a day. I decided after several years I wanted to see if I could live without it. Just so you know with Gabapentin you can’t just go off of it.

You need to taper yourself off of it. So I did and needless to say I was back to being a ball on the sofa but when going back on it I decided to talk to the doctor and say I wanted to see if 300mg would work as well as 600mg. Since the 600mg never fully got

rid of the head pain it just made life livable.

The 300mg does just what the 600mg was doing so why take more than necessary. I have also tried CBD in oil in a pill form I did not find it did anything for me. My pain increases with bending head down. We come to figure out that’s because my CSF fluid does not flow freely when my head is bent down amazingly I did not realize how much I bend my head down. I have also found that my GK surgery caused my atlas not to be aligned so “ my head is not on straight” 😂 got have a little humor when dealing with all this. So I go to the Chiropractor to get adjusted. All I say is find a good Chiropractor because a bad one

can make matters worse. I basically interview my during the first consultation to see if I want to go there. I have only been to three. Once you find a good one you don’t want to leave.

I do find relief from going again not completely gone but able to do more. I take

a drug called Butalbital-Acetaminophen-Caffeine 50 Mg-325 Mg-40 Mg ( 1-pill) but only one it’s really bad. I don’t take it every day or even every week just when it’s really bad. I hope this helped. I have tried so many things so if have any questions please feel free to ask or you can direct message me as well. Here are a list of things I have tried.

1. HBO ( Oxygen therapy)

2. Acupuncture

3. Nerve blocks

4. Spinal Cord Stimulator Implant

5. All different kinds of meds.

I’m not sure if I’m leaving anything out but feel free to ask you may have a new idea for me:)

Keep your hopes up and live the best life you can especially in the world as it is now.

Be safe and stay healthy. I wish you all the best I truly understand it’s not easy and it’s very difficult when people can’t see it so it’s like...

Niyani

Hi Niyani,

thanks for all this, it's really helpful.

I'm beginning to realise this is going to be a longer journey that I was originally thinking.

I have moved from 900mg to 1800mg to 2700mg daily dose of Gabapentin and I'm only now getting a level of relief that helps me to function somewhere back to normal but still get those bad days with no rhyme or reason why.

I'm also concerned about staying on Gabapentin for a long time as I know it's not really recommended.

If things don't improve more then I will start to look at some of the options that you and others have mentioned.

Thanks for all your kind words and encouragement :-)

I to was worried about being on Gabapentine for a long period of time. I have to say after being off of it for a month and then talking with my Neuroligst I decided my quality of life was more important. For me I know unless a new type of treatment comes up I will be on this

medication for the rest of the days of my life. That was personally a very difficult realization. I have never been one to take or need medication. It’s definitely a personal decision but know it’s okay no matter what you choose as long as you are able to enjoy life.

Best,

Niyani

Quite alot of post brain injury surgery leads to different types of headache and neuropathic pain and lack of attention...sometimes it's to do with the drugs you are on since surgery. The drugs that help can easily end up causing headaches. Read the leaflet enclosed inside the box of drugs. It never occurred to me my headaches and tiredness were connected with my surgery and drugs until I started going to and learning from the local headway group. Have u been going to a headway group?

It was my GP who told me that some of the drugs to alleviate headaches can actually cause them and this was a reason we held off on going on Gabapentin for over 6 months after my op.

Things have been reasonably stable since upping my dose but not keen on staying on these for the long term.

I was visiting my local Headway group for just a few weeks before the lockdown came in and will be back with them once we are allowed to meet up again in larger groups.

I also got the advice about drinking plenty of water that also seems to help although I'm typically drinking > 2l per day and unfortunately it has to eventually go somewhere ;-)

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