Sorry. I'm in that place again - sitting up in bed... - Headway

Headway

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Sorry. I'm in that place again - sitting up in bed, hoping I can write about how I feel to people who may get it. Or in this case maybe not

saville75 profile image

Sorry everyone. There are people who'd say this isn't about my head injury but that's the origin. All my problems have that origin. Anyway. TBI 13 years ago. Before that I took no pills. Now I take 27 pills a day. For various reasons. I've also put on 10 stone since my injury. Now my husband has tried to see if my pills could relate to my weight gain. The only thing he found was a relationship with my sciatica pills and weight. A few months after my injury I collapsed and had my first fit. I broke my pelvis in two places and I've had sciatica ever since.

The pills I take are 300mg Gabapentin and I take 12 daily. That's a shit load of it. Some people put on weight when taking much less of it. So a month or two before Christmas, my GP said I could slowly lower the dose to see if it has any effect. So I've been dropping it by one pill each week. Every drop makes me have cramps in my legs, sciatica and feeling a bit like flu. So here we are right now today is the first day that instead of 12 pills a day, I'm down to 6 pills a day. Half the dose. I suppose I should be proud I've got to this - I take 21 pills a day now rather than 27. However I'm sore. My sciatica is raging, my lower back, shoulders and neck. I just need to lie down, find a comfy position and hope to god that the land of nod allows me to drift off....thank you for listening / reading this. Over and out and I'll see you on the other side of tonight X

22 Replies

Hi, I think you will find that the majority of people who take gabapentin will put on a lot of weight rather quickly and that's also the case with pregabalin so keep away from them as well, I was told this by my neurologist at my first appointment with him following my brain injury and I also have a lot of nerve pain in neck and also sciatica and I have been taking 200mg of tegretol 4x day and 30mg of amitriptyline before bedtime which is working well for me and the amitriptyline also help me too sleep as well, my nerve pain also has its origins in my brain injury from falling down the stairs . Be proud of yourself everyday

saville75 profile image
saville75 in reply to twice

That's really interesting twice, thanks for replying. Glad you've found a good combination there - I used to take amitriptyline too a few tears ago and found it dramatically made me put on weight - as in a whole stone in two weeks! As soon as I stopped taking it, it came off again, luckily x

hi Saville75

it's ok to feel how you feel, cause you do.

The pain can stay a long time for various reasons,and because we tend to be more sedentary that ends up not helping any, in the weight department, for example.

Myself, I can't take anti inflammatories at all, not even Palmitoylethanolamide or PEA which is a studied derivative from palm oil that works well for some people. I have found getting the sugar shots helpful at times, though I am not sure what they call it and the ones I had used something besides sugar - they basically inject into a sore spot because the injection basically resets the cells in the area sometimes - and one of the theories is the pain may because the cells aren't taking their garbage out basically, and the injection triggers that somehow. So I've had 20 or 30 injections in a session sometimes... the lengths we go to...

It's very wearing to be in pain, and not sleeping enough helps nothing. You've done very well, really you have.

It is really hard for others who haven't been through something chronic to understand.

Have you reached out to Headway? they may have some advice up their sleeves or some doc or therapist it might not hurt to see - sometimes a second opinion can help, because they are always coming up with new stuff.

Oh, sometimes talking to your pharmacist can also help, as they may have some ideas of what else might work. When a person takes a lot of pills having a medication review now and then is a wise idea, I think. You also need to make sure none of them are building up in your system, as often you need a bit of a break as they don't work as well etc etc.

I feel for you. I hope you have a lovely fluffy blanket and a lovely hot water bottle and quiet neighbours.

And best wishes to your hubby, bless him for hanging in there with you...

Leaf x

saville75 profile image
saville75 in reply to Leaf100

Woah Leaf100 now there's interesting stuff in your reply - "sugar" injections and the reasoning? Never heard of that one! Plus people not understanding if they've not been there, ooooohhhhh yes indeed - especially with brain injury to be honest. That's why I find Headway so helpful as already people get it as they *have* been there. I may well contact Headway about my pills, I am starting to think that given the fact that I can (just about) drop to half my GABApentin dose then maybe there are others I can drop too. I have a dosette where I fill the week up and then just grab a handful and down them four times a day. It's pretty desruptive - especially if I forget to bring them when I go out. A proper pain in the arse.

Now then my friend who's a psychiatrist living in England has said to me that if she were me she'd get a private doctor to look over my case and look at my lifestyle, my pills, everything and see if they'd advise anything to change. I live with pain despite the pills, I'm very sedentary, , suffer depression, low self esteem, all that and I think that that could change. This consultation will cost me a couple of grand to get, but I'm thinking it may be the best 2000 quid I've spent... X

Leaf100 profile image
Leaf100 in reply to saville75

If you can get a well recommended private one it definitely is worth a try.

I'm in Canada and am lucky to have a specialist trained in the UK and he is often coming up with new things to try.

(I have found even some other people with bi can be very judgemental if they don't have the same symptoms, and I have a few less common ones, and hard to say whether their lack of empathy is bi or their personality. Luckily I've not run into it on this forum, but in person I have.)

I am also wondering if somethng called Hellerwork is in the UK. I have done it in the past and will again when the timing works. The theory with it is when you are injured or just do repetitive things, a weak muscle will make a chemical splint with the one next door and then they sort of act like elastics that pull your muscles and bones out of alignment. This program is a series of 12 or so that go through and break all those down and make sure everything is unstuck. They also observe how you move and give you tios to watch, like sitting down to pull on things like trousers, rather than standing and doing one leg at a time... It can be a bit painful,but you keep the gains you make, unlike massage which helps for awhile but doesnt stick. (I did it pre brain injury and had sciatica at the time and it went away. ) It also is not cheap , but one of those things I think should be free on every street corner. (Of course, one size never fits all, and you'd have to see what you think.)

The sugar shot thing here is available through naturpaths and a pain clinic at the hospital... one clinic calls them trigger point injections... not sure if they go by anither name or not.

X

Hi. Firstly, well done with reducing your dose. Often medication like this is increased to maximal dose (which you were on), to get control of pain. But not then reduced to a maintenance dose. Often with pain medication used long term, the body gets used to high levels, then there is nowhere to go, except add different groups of meds.

If you have just stepped down to your current dose, then your current discomfort could be due to withdrawal, you have possibly experienced this to some extent previously, in should pass, not pleasant, but will pass.

I used to be on a lot of meds. Even as a nurse, I didn't realise that some medication has a useful duration, in effect they have done all they can, the body adapts to just live with them. I was aware that some patients ended up on an ever increasing cocktail, because prescriber's rarely take a previous medication away when prescribing new meds, but I wasn't aware of some having a duration of effect.

Ok some are needed life long, blood thinners, blood pressure, and hormone/electrolyte replacements etc, many others after time have no beneficial effect, and in some cases can be detrimental.

I'm still on a fair few potions, but some have gone, or reduced. I hope in the future to get to the point I only take medication for physical reason's, but reduction has been put on hold due to other investigations which feel like they're never ending.

Pain relief is a bit of an odd group of meds. They can be of benefit long term, but pain doesn't play the game. It often finds a way of being a pain despite good pain relief. This often results in an ever increasing cycle of increased pain relief, example is your sciatica, the cause of pain is still there, grinding away, which resulted in the high dose of gabapentin. You have managed to reduce to a maintenance dose, hopefully the discomfort you are experiencing will subside, but if they don't have a chat with the Dr, would a lesser pain killer be used as a top up on bad days, or would it be the greater good to slightly increased the gabapentin.

Weight is a problem with many groups of medication, although they may not be noted as a side effect, they all will effect metabolism to some degree, and if they don't have a direct impact, then indirect. They may impact on your level of activity, or motivation.

It would be worth exploring with your Dr, if any other medications can be reduced, or stopped, it might be worth having a discussion with a pharmacist to look at interactions.

Sorry long winded, but as I said to my brother, when my brain starts, I have to let it out.

Best wishes

Ian x

P.S. never a need to apologise x

oh Ian I can't thank you enough for your reply - and please don't *you* apologise! It all makes so much sense to me what you're saying. of my 27 pills a day, 20 of them are for pain - both in my back and sciatica. I've swapped and changed with these painkillers dramatically over the years - I was even on Tramadol for a long time which - I'll be honest with you - was great as it actually made me high and happy. Thinking about it it's a good thing I was taken off it. As I said to Leaf100, I think this private consultation is going to be a very good idea. They'll look at the whole thing - lifestyle, pills, motivation, mood and give advice on what I can do. I can totally see how Drs would give another drug on top of another and so on, until the patient is wrestling with a cocktail of them. I think I've simplified things for myself over the years, but to have been taking 27 pills daily at the age of 46 feels like it's a bit much really. Right. I'm going to sacve up the money and get this private consult...here we go...and thanks again X

Save up your money by all means, but don't knock the NHS, it is just trying to find someone for the right job, that's why I suggest the pharmacist. You can look via the royal college for a pharmacist that specialises in pain control x

Thanks Pairofboots and can I just say I'm definitely not knocking the NHS at all - they have a bloody hard job - especially at the moment - huge hat off to them all X

I just meant that the NHS might be as good as paying a private provider if you get the right person on the case x

Morning saville, I can relate to what you are saying as I was with my partner for 2 years and she suffered the same. Back pain and then hip pain. She had injection blocks but they didn’t work amount of Gabapentin she was taking along with morphine patches was just endless. Have you tried (I know it doesn’t work for everyone) meditation apps as it helped Mandie.

Just trying to help

Nick

saville75 profile image
saville75 in reply to MXman

Your poor partner MXman. I had injection blocks for a while - they were meant to last for 6 months but I found only worked for 6 weeks so they were stopped. But the meditation idea is a very good one. I'm currently in a group of women who've had a child a few years ago and are trying to get their heads round rejoining the world - that idea anyhow. I'll talk to the lady who runs it, who happens to be a very good friend of mine. She's a psychotherapist so let's see what she thinks. Thanks for that X

Sorry you're going through this Lucy, sounds really tough. Oddly enough my mother has just been put on gabapentin to try (because she's got slipped disks and trapped nerves) so I've been trying to read up on it. The following is a bit off the top of my head, so please forgive me for the lack of originality. You probably have an element of withdrawal going on, which must be pretty grim. Plus increased pain is never good, it's exhausting to deal with..

Gabapentin is only truly effective for pain in 30% -40% of cases apparently, so you might find something better, particularly if you've been on it a long time, as new stuff does come along. One thing that worries me about amitriptyline and Gabapentin is that they're both anticholinergic, but they've both been used for donkeys years, so am inclined to think that if they are the thing that works for you - you just have to weigh up the pros and cons for yourself. We all react so differently drugs. For my mother and me, I sort of feel we're too old to take the chance.

Is it worth you locating a pain relief specialist consultant of some sort in the NHS and get your GP to refer you as a start? What's your GP like? There are pain clinics I think?

Nothing like what you've got through, but I was talking to my doctor friend and she explained that the brain likes to be efficient, so once it starts feeling pain for long enough, it just tries to hang onto the same pathway. So all sorts of things can persuade it otherwise. Do you have a TENS machine, or are they old hat now?

What about an MRI to find out what you're dealing with in your pelvis now? Privately they're £400-£500 in my area, and sorted out in a couple of weeks.

Plus some people get a lot of pain relief from acupuncture, which might help you to get through the next few weeks while you sort something out - I think I'm right in saying that even NICE are ok with it for pain relief? Haven't researched it lately though.

Keep talking to us, you're having a rough time. Hang on in there

Jen x

Hello there Jen, thanks for getting back to me! Right, I've been on gabapentin a few years now. Before that they put me on amitriptyline which made me put on weight in an almost comical manner - we're talking a whole stone in two weeks! So they changed that.

I've been going to a pain clinic in my area for years. Never had much to say to them, other than yeah it's ok and they've gone yeah ok then. But this is different. To be honest, I've had a private (or NHS if I can find one) consultation that'l look at the whole of me ie pills, lifestyle, exercise etc. I've found a really good GP who recommended I lower my gabapentin dose. So I'm going to get back in touch with her once I've looked around online to see what I can see.

I do have a TENS machine and have tried it a lot, though never really managed to find the same amount of pain relief as with pills. Is that me being lazy? I fear so. But to be used accompanied with another route then it can be very useful I think. The only problem I have is losating the right place on my back to put the sticky things. It's a bit of a touchie feelie method that I don't really trust. Oh and I had a private MRI a few years ago to see if there's anything new in my back that could change my treatment. Nope, nothing except what they already know, which was disappointing, but there you go. I also had acupuncture a long time ago for my back pain - at the same chiropractor as Billy Connelly I might say (!) and they put pins into my back, took them out and then said I'm free to go. I couldn't move - couldn't actually get off the bed. So I rolled myself back into a vertical position and didn't go back. Maybe I just had a dodgey acupuncturer!

So I'm going to make a list of things to talk to my nice GP lady and phone her up to see if she has any NHS people that could offer me what I'm after. If not then I'll be saving up for my private consult I think!

Great to hear from you,

Lucy x

Oh and I've been giving my artist website and overhaul over Christmas so if you're interested then take a look lhodonovan.com!

Oh Lucy, the acupuncturist sounds awful! Try another one? 😊 You obviously react badly on these drugs re weight gain, so finding something else to take, with other support like acupuncture, sounds important. Mum's had much more trouble handling pain since her acupuncturist retired - I thought it was working as a placebo, but apparently it does have a place in pain relief, NICE allows it on the NHS.

Yes, your best route does sound like pursuing everything with your nice GP. Hang onto her!

Not to beat you up, because as you know I have my own issues with weight, but would you have less pain from your pelvis if you could lose some of the weight? ( Am sitting here with as yet unused trainers wondering if I have any random post Christmas food supplies to eat )

It might be more than one specialist to sort out your pain and then your weight loss, NHS or otherwise, I'd be a little wary of anyone offering to do the lot in one go. Although my younger sister gets a lot out of a personal trainer at a local gym for fitness and weight support - but they vary a lot. Your GP might be useful in either reviewing your drugs, or referring you to someone that can.

Are you at the point you'll need a gastric band, do you think? Is that if something to talk over with your GP too?

Will look at your website! I've been backsliding over Christmas, went off to my art group yesterday and felt very underskilled from lack of practice. But at least I'm underway again, and I don't hate what I did yesterday quite so much today!

Keep me updated anyway?

Jen x

There's absolutely no question Jen that the weight is making the pain worse. Definitely. i get embarrassed about walking up hills / stairs as I get out of breath in a way I never used to. I've actually looked at gastric bands and the parameters with the NHS. I seem to reach the parameters actually, though I imagine it'd be pretty competitive to get a slot and there'll be other people out there who need it more than I. But I've thought about it. I've also thought about diabetes - I feel that that's pretty imminent if I don't lower my weight too.

Can I say - the very fact that you went to art group shows that you haven't backslid completely! Oh and I find that if I'm angry with my painting, if I take a break away from looking at it then when I go back then it doesn't seem quite as appalling as I thought beforehand!

Will keep you updated, and oh I put my website on a page on Facebook and some random guy has just asked how much I charge for a portrait! He sounds keen but I don't know so I need to have a good think about it before I answer him!

X

Ooh that sounds exciting! Thank you for the kind words of encouragement Lucy, I was feeling pretty freaked out by my painting yesterday afternoon...I think you're great with all you've achieved with your painting and your family. I haven't had anything like as much as you to deal with and a mere six hours with the three and a half year old granddaughter at New Year left me on the floor the next day.

Yes, I'm already pre diabetic worryingly. I had a disastrous year for exercise and weight in 2021 - without being weekly accountable to the physio for keeping up daily aerobic exercise, I haven't been great at all. If you can find a private gym that isn't about the body beautiful and is more about health, I think they can be helpful - my sister is still big, but I can see she is strong and healthy. She gets dietary advice which seems sensible too.

I accidentally ( truly!) bought a book on Amazon which was by a doctor who works by with people that are badly obese - it seems to focus most on lifestyle changes than deprivation. I don't know if some of the principles might be helpful. I haven't got to grips with it yet but will give it a go, and let you know? Nick Fuller - interval weight loss - essentially one month on a diet one month maintaining weight loss.

It's funny because my good friend and I - both of whom have the same aged little boys - met for coffee yesterday and we've agreed something. That we're going to be supportive to each other (and another friend too) in terms of what we eat. We're going to do it in different ways. She won't be weighing herself at all, whereas I will be, as it's just the different ways we work. But we both agree that we can't have this eternal want to lose weight and never lose any. It's daft and we're losing time with ourselves and with our children. So let's see if it works!

You know when I think about it, I can see now that if I hadn't had my brain injury then I may not have been able to advance myself with painting and with family. No TBI and I would likely now be further on in academia, which is notorious at requiring full on, long hours and working through weekends. There are people I know who haven't been able to fit in having children (if they're a woman that is, not necessarily if you're a man which is frankly annoying) let alone having time to paint too!

X

Yes I think you're right. I hurled myself into my career after my divorce, but I did have much less time for the family or painting - ok, virtually none! And out the other end of my career, although I loved it, I do question whether the pile of exam revision that mounted up each year was actually really worth it - it just looks like dusty paper now! But it must be galling for you not to have done more. Let's just call ourselves strong resilient people, shall we? X

Exactly. Strong, resilient people you and I! X

Hi, snap on dose and gain! It's a daily battle. Quick random question - I've always been worried that the TENS machine will further damage already damaged nerves - do you know if this can happen or if I'm completely making that up?!

saville75 profile image
saville75 in reply to Chat2U

Hmmm never heard of that before Chat2U. Ever. That's not to say it's not true, but I went to a private consultant a couple of years ago for an MRI on my back. During the consult he recommended using TENS to me with no warnings or danger mentioned x

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