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Re: For MelMelMel
StormAtSeaStormAtSea 10 Nov 2020 16:23
in discussion Forum / My story » For MelMelMel

Hi Mel,

I'm so sorry, I didn't see your posts until today either!

I'm sorry to hear things have been difficult for you over the past few months. Covid has messed up medical appointments for so many people with non-Covid-related issues and it's hard to know how to deal with something like EDS, if that's what it is, when you have no access to a specialist.

It's good to have some answers (or potential answers) as to why your migraines are so resistant to abortive medications, etc. but very tough to be left to manage the pain by yourself.

I can't remember but did you every try acupuncture? I'm thinking it might help if the origin of your migraines is tension and pressure in your neck. I had it for migraine. It didn't work for my headaches/migraines because I think mine are more food-related in origin but it did help to relieve pain in my upper back and shoulder area. Might be something to explore, if you haven't already, though I suspect you might have done, as you have tried so many things.

Regarding your liver, have you had any tests done to check how it is? Having tests might put your mind at ease, perhaps? 1-3 tablets a day doesn't sound like the kind of dose that would damage it but you know your own body and how it should or shouldn't feel.

I also think Covid has made other health conditions harder to cope with, especially as we have been left to our own devices and the isolation of isolation/quarantine/lockdown can make it more difficult to deal with everything.

I'm still dependent on Solpadeine too. I hover between 5-4 a day. I'm trying to taper it down to nothing but when I do, my back aches or it kicks off a headache or migraine and I go back up again. I am pretty much on 4 a day most of the time. I plan to go to 3.5 tomorrow and then 3 for a few days before tapering further.

I find that keeping the dose relatively regular, time-wise, staves off migraine, for the most part. If I take it irregularly, it can provoke an attack. My brain is still foggy and my blood pressure is too high but it is being controlled by medication.

I'm transitioning over the course of the month to a plant-based diet, adding one plant-based meal a week. I tried to do it all at once and my stomach had a massive tantrum! So slow and steady wins the race, I hope. I'll let you know how I get on with it. I stopped drinking the smoothies for a bit, in part because I seemed to be getting some kind of arthritis pain in my hands (though why that should be I have no idea - the opposite should be the case … maybe something in the frozen mango?) and in part because I got into a rut and didn't have the energy to do anything.

It's an uphill battle, isn't it? I guess we've got to remember that codeine metabolises to morphine and although not everyone takes Solpadeine addiction/dependency seriously, it is a form of opiate addiction/dependency and is also very hard to kick, so we need to be as kind to ourselves as possible.

Chat soon.

Take care of yourself and wishing you all the very best,

Storm

Re: For MelMelMel by StormAtSeaStormAtSea, 10 Nov 2020 16:23

Hi Mel,

How are you doing? I'm sorry, I would have replied to you long ago had I seen your post but I haven't been on the message board for a while.

I hope you are OK?

Take care,

Storm

Still on one a day. Feel like I've powered through pain I would usually self medicate, so that's good.

Only had one yesterday. One this morning.

If I can aim to only take one a day for a whole week, I'll take that as a win. I've been reading too many horror stories about liver failure and how you can bleed to death if the scarring blocks a vein. You essentially get varicose veins in your throat which are prone to rupturing. I really want to avoid that. GP's keep telling me it's perfectly safe to take paracetamol long term as long as you're not overdosing, but I certainly don't feel like my liver agrees.

I had two yesterday :(
One this morning.
I just want it to be last. I'm so scared my liver is failing.

Didn't take any yesterday. Took one this morning. No more today!

Had a bad migraine yesterday but only ended up taking 3 in the whole day. Still not ideal, but better than the usual 6-7.

Day 5 - Still had to have that one dose. I'm hoping to take them later and later in the day so that I can break the morning headache pattern, and go from there.

Day 4.

Only had one yesterday. Been dealing with daily nausea and acid reflux for about a week too. Scared it's my liver struggling.

I had one this morning for a pretty nasty headache which seems to have subsided now. But this nausea is horrific. I really hope it's something that will pass, and not my liver/pancreas/something important I need. I'm aiming not to take another fizzy today. Not really feeling any cravings for them.

Day 2. Woke with the rumblings of a migraine. Resisted for the morning, but took one fizzy now. I'm going to take 3/4 of one this evening. I feel like I'm probably going to trigger a massive headache, but at this point, I'm just going to try and stay firm on slowly reducing use.

I got through the morning without a fizzy. Ended up taking one this afternoon. Hoping that's the only one I take today. I'm going to stick with some kind of tapering, as cold turkey only sets off a monster migraine.

I've posted here a few times before with lots of grand plans to give up these stupid b*stard tablets and each time I either let myself off the hook for a few days, forget to update a thread or spiral back into regular use.

I'm marking this as my last chance. I want to regularly update this thread with progress (and probably some occasional pitfalls) in the hopes that it creates some kind of accountability for me, and more importantly, help for anybody reading it.

So, actually sitting down and thinking back, I'm pretty sure I've taken Solpadeine for over a decade now. It must be about 14 years if I'm really counting properly. That's a horrific number to look at right now.

Right now, my daily usage isn't super high, but it's frighteningly frequent. I'm taking between 1-3 daily. On bad days, that can go up to 6 or 7.

Without fail, I will wake up in the morning with a headache, and I'll take one fizzy. Clink into the glass. - 500mg Paracetamol, 8mg codeine…and a truck full of sodium. I've already given my liver some hard work to do and I'm barely dressed yet. I then wait to see if the headache fades. Most of the time it does. If it doesn't, I'll take a second fizzy. That already starts pushing up to my daily limit of sodium.

By early to mid-afternoon, I tend to find myself reaching for another. I'll check my watch. Ok, it's been a whole 5 hours since I took one, and I quietly congratulate myself for leaving it so long. The afternoon fizzy is some kind of messed up reward in my head. Crazy how I can justify it so quickly. Of course, that headache starting up needs to be nipped in the bud. If I just take care of that backache, I'll be much more productive. It's the last one for today, I promise myself, and 3 isn't so bad! Constant excuses.

So, by late afternoon or early evening, I'm either ok on the pain scale, or I'm suffering from a genuine migraine. This is the deciding factor between fizzy or no fizzy. Of course, I feel justified in taking more if I'm actually having a migraine attack. Not a headache, not even a bad headache…an actual, medically diagnosed, head destroying migraine. People who have it know what I'm talking about. It's so much worse than words can ever describe.
Of course, this reasoning makes me feel ever so justified in tearing open the packet and letting two tablets clink into a glass of water. You know, like people do when they have severe pain! I even let myself have the full two tablet dose because this time it's totally ok. I have a real pain like normal people!

Except I'm not normal. I'm addicted to Solpadeine. It's slowly killing me.

If the late afternoon migraine decides to ramp up, and those two fizzies do absolutely nothing, I curl up in a dark room and pray for the pain to pass. I yearn for the days and hours that I spent without a migraine, and some of those were because of Solpadeine. I focus on breathing slowly and evenly. I focus on keeping my head still so it doesn't set off waves of throbbing agony. But more than anything, I focus on the time. When can I take my next dose?

Four hours pass and I immediately stumble to the kitchen to fill a glass of water, tipping two fizzies into the glass. That's got to be over my daily limit of sodium. Hello, kidneys…are you doing ok?

Again, they barely take the edge off the pain. They're not actually worth it, but I tell myself they are. Like 1/16 of the pain being taken away is somehow going to make this migraine manageable.

Eventually, I will be too exhausted to stay awake and will fall asleep.

By morning, the pain usually has returned to the common garden variety of headache. Nothing a glass of water and a brisk walk can't sort out. But what's my solution?…just one fizzy. I feel a little bit less justified with this one because the pain I'm feeling is definitely manageable. I know this, yet I tell myself that this is the last one for today, and I'm just getting rid of the tail end of a migraine. All lies I tell myself, and often believe.

Most days aren't filled with intense migraines like that one, but I still manage to put away at least 2 fizzies a day. I can't imagine how my kidneys are holding up, and I'm terrified my liver is in bad shape. As I'm typing this, I have an ache in my upper right ribs and shoulder. Can't tell if it's muscular, can't tell if it's my liver swelling and dying.

I don't know how much damage these have done to my body, or how much they have contributed to my chronic pain. The only thing I know for certain is that this is my last chance to stop.

I don't care how much genuine pain I actually feel, I can't keep taking this poison.

So, starting from today, at 4pm in the afternoon, I'm going to cut back. I'm going to try and check in here every day with progress.

I hope this helps somebody.

Mel

Re: For MelMelMel
MelMelMelMelMelMel 07 Oct 2020 14:07
in discussion Forum / My story » For MelMelMel

Hey Storm,

So sorry I didn't see this till now.

Thanks for much for the info. I will definitely take a look. Much of what you mentioned are things I've been trying to incorporate into my lifestyle. It definitely helps some. :)

Due to Covid messing things up, a bunch of my appointments were cancelled so I never got officially diagnosed with EDS by the only specialist taking patients, but we are still 99% sure I have it. Unfortunately, it's a genetic problem with collagen, so basically my joints are way too stretchy and my body does not make the right amounts of connective tissue.

Plant-based food definitely helps my muscles to take over what my ligaments apparently aren't doing, so I've been sticking with it as best I can. I'm still contending with a considerable amount of pain, and fizzies are still in my life, as much as I wish they were not. I REALLY wish they were a distant memory.

My migraines are now being classed as cervicogenic and occipital migraines, so they're thinking its from my neck not being stable enough due to being too double jointed, and extra pressure gets put on all the nerves and tendons there, resulting in the pain. Ugh! It explains why abortive meds, or migraine management didn't do all that much for them.

While it's good to have more answers, it's a little disheartening that I'm basically being left to manage the pain myself, while fretting that taking anything is doing more damage to my insides. What do I end up reaching for when the pain really ramps up?…yep, those horrid white fizzy tablets. I'm taking between 1-3 fizzies daily, but usually no more than that, and never over the recommended dose. I still can't help feeling like my liver is hanging by a thread.

I'm in a kind of a rut with this if I'm honest. I really wish I had more encouraging news.

How are you doing with everything? I hope you're faring better and have managed to boot the fizzies.

All the best,
Mel

Re: For MelMelMel by MelMelMelMelMelMel, 07 Oct 2020 14:07

Dear Storm,

I hope your ok. Just an update, I’m doing really well! I haven’t touched solp since I stopped completely. I’ve had a few rough days but now I feel so much better. I don’t even think about codiene anymore. In all honestly, this time it was so easy. Just wish I had done it like this all the other times I tried to stop, or stopped.

I hope you can quit someday too.

Take care

Dear Storm,

I’m so sorry to hear you are stuck on one tab four-five times a day! How long have you been suffering with migraines? How long have you been taking solpadiene and what was the highest amount you used to consume?

Regarding migraines, I used to get them every month. It all started the day of my sisters wedding, seven years ago. After the day was over I didn’t feel too good. So I fell asleep on my sofa to wake in absolute agony. I’ve never experienced anything like it, not even child labour matched it. At the time I was taking solpadiene but not to the extreme. Anyway, I managed to get to my dads house with hardly any vision and my son as a co-pilot whilst driving. It was dangerous but I knew my dad had tramadol and strong Codeine tabs. To ring him would have been a no no as couldn’t talk. Once arriving I took both tram and strong Codeine. Within half hour I was better. However, what cane after was horrific. I developed labithitis (think that’s how you spell it). I couldn’t walk properly, write or compute. The doctor diagnosed me. It took me three months to write with a pen and walk straight without looking like I was drunk! No help from the doctors. My legs would just go numb and constantly having pain in my head.

Unfortunately, there on every month I would have a migraine. I knew it was coming on. I would feel very unwell with a headache and be disorientated. I would go to bed and the pain would wake me early hours. I would be sick and the other end…sorry. But the pain, oh my god! Then for two weeks I would be disorientated. I tried so many triptan family tabs but nothing would work, not even solpadiene. The other thing was tramadol. This went in for four years! Even through uni. I did an exam with one. God knows how I managed but you just do.

Anyway, I believe it was more of a mini stroke, due to the wedding and my highly strung bossy sister.

What I did to relieve it…just to note, I do not suffer anymore. I have had the odd few. Even in times of stress I’m clear…phew. But, after doing so much research into it and speaking to many sufferers. I started using on a daily basis extra virgin olive oil. It has the same additive as the triptan family. I would put it over my dinner and started adding leafy greens as well. I wasn’t on any medication that could cause migraines. I also used to get Botox in my forehead. All this worked for me Storm. Maybe you could try it!

I really feel for you, I do. I would never want to be like that again.

On my current situation, I struggled last night with my legs. No pain in my head but my body was aching a lot. Today I’m better but I know today and tomorrow are going to be hard, as always it’s the second to third day for me. But this time it’s a breeze compared to other times.

Yes I did half a tab four to five times a day. Every time I cut back a bit it would hurt but for a day or two. The killer was cutting from three to two and spacing them out more. My head in thumping and fuzzy but not painful if that makes sense.

Thank you for the information on the smoothies!

From research, as you probably know, the brain has to learn and compensate without Codeine. So it’s down to will power. You tell yourself ‘oi listen you, this is what’s happening and I don’t care how you feel about it, put up and shut up’. You can train the brain to do marvellous things. I’m hoping your migraines are just your brain giving you pain on your weakest part. Mine is my gynaecology area. But I know that’s what the brain does. Trying to trick you that you need to take it.

I really hope you manage to cut down to half. Maybe, like I did, do half in a shorter space of time. Not to a dangerous level, but so your brain gets used to having smaller doses but your not upsetting it, if you see what I mean. It worked for me.

Do take care Storm, you CAN do this!

I’m always here if you need me, and will keep checking and I’ll update you on my progress.

Hi Tired and Weary,

Thank you so much for laying out for me what you did. I think you have had amazing courage to reduce from such a lethal dose to almost nothing (and soon to be zero). You deserve to be very proud of yourself. It's an incredible achievement.

It's wonderful that you don't even want it now. I think that's the beauty of tapering. It gives body and mind a chance to get used to leaving Solpadeine behind.

I'm have been stuck at four per day (occasionally five if I have a migraine coming on), usually in four doses of one tablet each, roughly four hours apart (sometimes less, sometimes more, or a mixture). You're right about the ritual; I have a preference for the same mug and do find the clink clink fizz comforting at this stage, even though I know it's screwing me over.

I started drinking anti-inflammatory smoothies last week and they immediately helped to reduce back pain, literally after the first pint. I have not made them over the past few days, though, because the last one I made tasted so bad. I am working out what kinds of leaves and fruit to use to make them bearable to drink. They have a great effect, though.

I reduced to 3.5 today but just went back up to 4 with a half-tablet. I could feel a headache forming along my brow and as I'm a migraine sufferer, anything like that sends me straight back to Solpadeine, even though I know they are contributing to migraine and making me more sensitive to pain in the long run.

It's fascinating that your vision improved, too. I am very short-sighted and have had quite a lot of eye trouble over the past two years. I hope kicking Solpadeine will help that, too, and the thought of a clear head is one of the biggest things spurring me on.

It also disturbs my sleep, even if I take it early in the day, because of the caffeine or the salt, I think. It seems to irritate my bladder and cause me to retain water, which magically wants to be released when I lie down at night. Then I need to go to the loo, then I can't get back to sleep, and it becomes a horridly vicious circle. Then sleeplessness triggers migraine and it starts all over again.

For some reason, I am finding it very hard to reduce below four a day. I hope that starting the smoothies again tomorrow and drinking more water will help me reduce further fast. It's not a huge amount - the caffeine is equivalent to one cup of strong coffee and the codeine equivalent to only one prescription Solpadol tablet - but perhaps my body is dependent on this amount for the moment. When you say you reduced to half, did you mean four half-tablets (effectively two whole tablets, split up) per day?

When I was younger, I could tolerate more pain but I have found that since I became dependent on Solpadeine, my pain tolerance has diminished. Apparently it can make people hypersensitive to pain, according to the doctor at my migraine clinic. I need to remember - and accept - that any pain I feel upon reducing the dose won't last long and probably won't even be that bad.

Thank you again for writing back. It is such a help to hear what you have done and it's also very inspiring that you have been able to reduce from such a huge dose to practically nothing. If you can do that, I can certainly do this :-) Looking forward to your last dose. And mine.

Take care and all the very best,

Storm

Oh and I will check in once I’ve finished the last quarter!

Speak soon

Dear Storm,

I will be honest, I am very proud of myself. Before when I’ve tried to quid I’ve done it too fast. You know the one, ahh this box and that’s it. I think I’ve returned to it in the past because I’ve missed it. However, cutting back so slightly I’m not missing it. There’s no high when I take such a small amount and really not much in the way of withdrawal symptoms.

Right, what I did was…

At the start I was doing three each time, roughly every two to three hours…terrible I know. So I cut back instantly to two a day. It hurt like hell to start, but only for a few day’s. wanted to rock myself with the pain in my legs mainly and I wasn’t very coherent. But it didn’t last. So I took two for about a month, and tried to space the tablets out rather than every two hours, I would take every three hours or four and rewarded myself with a nice treat, as in a cake. What I also found helped was a nice cuppa as a substitute when I felt I needed more solp.

After a month I cut back to a tab and a half, again it hurt like hell but I knew it would only be for a few days before my brain decided to accept the lower dose. I was thinking ahead of my brain. Trickery! I also would take nurofen to help the leg and back pain. I did this for another month. I didn’t change my diet but did drink plenty of water and kept busy.

Again, after another month I cut back to one tab about 4-5 times a day. Strangely it hurt more. But again I knew it would only be for a few days, and it was. That is when I put this post up. I continued to drink plenty of water and kept myself busy.

After a few weeks I plucked up the courage and cut back to half a tab. It didn’t hurt as bad. I think I didn’t really notice it to be honest. When it came to the dreaded time of needing to take some, I actually felt I didn’t need too.

Now I am on a quarter of a tab, I don’t really need it, maybe only the first thing in the morning. I have 4 tabs left, so after them that will be it. I know it will hurt again but I honestly feel it will only be for a few days.

It’s funny, when you are addicted to solpadiene you find that the whole going to the pharmacy, the clink clink clink fizz, the same cup, all the routine you go through while taking them is also addictive. It’s hard to break any routine, therefore breaking all those little routines help! And I did that without even thinking about it.

At the end of the day, solpadiene holds you back in more ways than one. I was just fed up with it! Since cutting right down, I have regained my friendships, my studying is improving, I sleep better and do not wake up feeling like I have a damn hangover, and my vision had improved.

The way I have tackled it this time is defiantly better than before, mainly because I don’t miss it, even while taking such a small amount.

Sorry if the grammar is slack, I’m trying in the middle of cooking a dinner for 6 lol.

I really hope you defeat solpadiene Storm. I honestly feel you can.

I’ll keep checking on the thread and here if you need me.

Take care.

Hi Tired and Weary (hopefully not so tired and weary now :-) ),

I am so happy for you that you are now down to half a tablet a couple of times a day. That is absolutely fantastic. Brilliant that the side effects are minimal and that your liver no longer hurts, too. I think you truly dodged a bullet there. I think it's a good idea to get bloods done nonetheless, though, yes, just for confirmation. Luckily, the liver is capable of great regeneration if it hasn't been pushed too far and it sounds like yours in on the mend.

Brain fog is a HUGE symptom for me, too, compounded by the fact that I am also on blood pressure drugs that cause brain fog! People don't believe me when I say I can't remember anything because my long-term memory is good. My short-term memory is abysmal, though, as is my ability to think or take on new challenges. I am so looking forward to being clear-headed. I can barely remember what that feels like.

It's wonderful that you are going to take another degree. I also had a hard time getting through my primary degree, many moons ago, when I was taking a lot of Solpadeine non-addictively but frequently for severe migraine. My head was like mince. I don't know how I got through it. I am looking forward to my brain fog lifting when I am finally free of this menace, which I hope will be within the next fortnight.

Just with regard to tapering, how fast did you do it? How much did you cut down by per day? I'm still trying to find the right reduction dose for me. The smoothies are helping but trying to cut down too fast has sent me backwards in the past and other factors like insomnia can get in the way by triggering migraine.

Thank you for your reply. I am so happy for you. Take care, too, and stay safe.

All the best,

Storm

Dear storm, thank you for your message. Just like to let you know I am down to half a tab a couple of times a day. The side effects are minimal and my liver no longer hurts. However, I will take your advice and have bloods done to see if there is any damage. I only have 10 tabs left, which I will be quartering as of tomorrow- as it is in my weaning plan.

I would like to say, I am loving the fact the brain fog has lifted. I remember so much now. I honestly do not know how I’ve made it through my degree. This determination has spurred me into taking another degree. My future is looking bright and I feel so focused.

Take care and keep safe

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