Toothache! Really

Lubs

Hi,

I've not posted for a couple of days, as I keep falling asleep when I'm in the middle of doing anything. Yes, even going to the toilet - now I have my husband asking after a few minutes if I'm ok (it wakes me up and allows me to finish the job!)

I've had terrible jaw pain, but suffering from Fibromyalgia and TMJ I didn't think much of it. Slowly I increased my pain relief of morphine from 30mg s to 50 but it wouldn't have an effect on the pain. (I'm back to 100mg per day), plus the additional 2tbls of oramorph when it gets bad!

I thought I go to the dentist to eliminate toothaches as a cause before my neurologist appointment next week, well I was wrong! Although I couldn't open my mouth much, the dentist managed to determine inflammation of the gum around the left wisdom tooth, which is wobbly. I was quickly referred to the Lonfon Gerneral Hospital for a request to have the tooth removed. The letters were passed to me which I posted yesterday first class.

The problem is I'm taking diazepam for the headaches, morphine, oramorph, neurofen ( which the Dr from 111 NHS direct told me I could take), pregabalin and topirimate all for pain relieve. There is something wrong when you have to produce a list of medications, rather than just say them!

I feel like a zombie who has no energy, and when I want to eat a ice-pop, because it cools my mouths, I'm told 'I'm not sure all those ice-pops are good for you!' I'm brushing my teeth five times or more a day, because the water and mouth wash gives me some relieve, but really, I'm 39 not a child.

Why can't consultants see us as a patient as a whole, not just an old car, which needs parts replacing. All that is happening is that I'm be different consultants who do not talk to one another, and therefore do not realise that my quality of life is not great, that to them not treating the whole system.

Sorry for the moan, it's just how I feel, when they say 'all we can do is manage your symptoms'.

Lubs

dreamdaisy

Because that is what they can do - well, not them, it's more a matter of us as the patients managing our symptoms with their help.


Brushing your teeth so often will weaken the enamel - suck ice cubes for relief, that will also help to keep your fluid levels up during this hot spell. I know the misery of toothache, I once described my PsA pain to a neighbour as being like having toothache in every joint; her reply told me she wasn't listening to my reply despite asking me the question - 'Go to the dentist then' she remarked. I hope you get to see the dentist soon and please, try the ice cubes. DD

PS There's nothing wrong with presenting a list of medications (why try to remember eight or nine things, it's another effort which can be cut out - I'm all in favour of that!)

Lubs

I will definitely try the ice cubes, going to get some now.

I can't feel my tongue because the pain in my tooth,mans swallowing is difficult.

I hated going to my previous dentist, he was the same one I've been seeing since I was 5years old. In the end someone made a complaint about his hygiene practices - it didn't fill you with confidence when he put a blue bib, with blood stains from the previous person. My husband saw him once, when he came from Wales and found his own dentist after he left a cotton wading in his mouth after tooth work..lol

Maybe this is why I'm suffering now! Well hopefully this hospital that I've been referred to is really good for facial pain, and deals with TMJ.

Thank you for the advice, although I think reducing brushing my teeth maybe difficult as I like the feeling of the electric toothbrush on my gums, it's like having a massage!

Lubs x

As5567

try pinching/pulling the skin between your thunk and index finger on the left side if the pain is on the right side in the mouth and the right side if the pain is on the left side of the mouth. It may sound silly but my dentist told me to do this when I had tooth ache, and although it only works for a minute or 2 its better than nothing.

stickywicket

Your GP does 'treat the whole system', ie you, Lubs,but consultants specialise as no-one could understand the entire human body in the fine detail that they study for their own area of expertise. They then report back to the GP who deals with 'the patient as a whole'. Short of a robot with a massive memory bank, I can't think of a better system. At the end of the day the person responsible for us is us. The docs recommend and we choose. Mine are great at talking over difficult decisions with me and explaining pros and cons of treatment or no treatment but the final decision as to what I do or don't do / take or don't take is my choice then they support me in my choice.

As for excessive tooth brushing, DD is right. It's not good for the enamel and, although healthy gums require daily brushing, excessive brushing can damage them too so your argument 'reducing brushing my teeth maybe difficult as I like the feeling of the electric toothbrush on my gums' doesn't really hold. If you want to hang on to your teeth get it down to the recommended two or three times a day.

Good luck with the neurologist next week.

AmandaJones

Oh honey, I really feel for you. Toothache certainly ranks among least tolerable :? . Have you tried clove oil? It contains eugenol, which is a natural antibacterial, antiseptic and painkiller. Clove oil is able to effectively relieve much of the pain and discomfort of toothaches related to tooth decay.

Rinsing with warm salt water, might also help. Dilute one teaspoon of salt into a glass of warm (not hot) water. Rinse your mouth several times and spit it out. It can help remove any food particles being lodged in tooth cavities or between teeth and gums causing irritation and pain. Using salt water can provide toothache pain relief, reduces the risk of tooth infection, and soothes sore gums.

Try this remedies till you meet your dentist. Hope it helps!! Get well soon.

Amanda.

Lubs

This morning was really bad, the pain starting slowly at 4.30am. But I did nothing until I got up at 6am, when I take all of my medication. But it was too late, the pain was in full swing by then. I have to eat with my meds, so all I could do was cry and cry. (men! My husband had no idea of what to do, he looked sick with worry!)

I placed a heat bag onto the area, but as it's the wisdom tooth, it covers most of my left side of the face. I managed to eat a small amount of runny porridge. By the time the medication kicked in I was able to have a cup of tea and go back to bed!

I'm back on morphine, both slow release and the oramorph, neurofen , and diazepam. I need more time sleeping and taking pain meds when I feel the first signs of the pain.

I've also stopped brushing my teeth more than two/ three times. But I have started to use warm water and salt to rinse the mouth, this really helps. Bu what I find, is I'm currently experiencing pain, my left eye now continuously waters. It will not stop, this has to be linked to the farcical nerves. Luckily I've got a neurologist appointment this Monday, the poor guy doesn't know what's coming his way!

dreamdaisy

I presume you mean facial nerves. The time to start the pain relief is before it builds but with the amount you are taking I'm surprised it's getting the chance.

Our husbands cannot help, neither can our friends or family. These are our lives and the only ones who can deal with what happens is us. We have to assume responsibility for dealing with our live with the support of our doctors. I agree that the wisdom tooth trouble on top of everything else is an outrage but it's down to you to begin developing some coping strategies: piling strong med on top of strong med is not going to help because you will, eventually, run out of pain relief options. They may also mask what is actually going on, especially if you are too 'fuzzy' to discuss your symptoms and options. Drugs help to soften the pain but they are not the answer; we all have to learn to live with pain, it's part-and-parcel of our conditions. Please be honest with the tooth people about the amount of opiates you are taking because they will have to adjust the level of anaesthetic they give. I wish you well. DD

Lubs

Hi DD,

From the last time we had a chat I managed to get my morphine down to 60 (30mg am and pm) per day. However, since having the toothache I've had to admit to my husband the decrease in morphine and why. He can't understand that if the GP has stated 100mg is ok for me to take I should do so, even if I need it or not. We had a good argument in front of the nurse, whereby it told him, that I wanted to feel alive.

In the end I just gave up, because I know that I need the pain relief for the toothache and arthritic pain, but also I'm seeing the neurologist who will side with me and want me to come off these meds. But I will get him to explain to my husband the problems associated with the high dose of morphine. I can already tell that I need more to get rid of the pain I'm in.

But my husband thinks I read too much on the internet and am one of those diagnose yourself doctors! While he knows I will always listen to my consultant - just not my idiotic GP, who does nothing, but prescribe you more pain relief. I've not even been referred to a pain clinic as I've requested!!?

Yes! I did mean the facial nerve. It's giving me a lot of pain at the moment,

stickywicket

One of the hardest things about arthritis is seeing our pain hurting those we love. Correspondingly, one of the hardest things about living with someone with arthritis must be the sheer feeling of helplessness when seeing us in constant pain. None of us wants people we love to be in pain let alone constant pain. Your husband is trying to take away both your pain, and therefore his, by advocating the strong pain relief. If only it were so simple.

You yourself seem to have a very muddled attitude towards the pain relief. 'I wanted to feel alive' 'I know I need the pain relief' 'I need more to get rid of the pain' 'my idiotic GP who does nothing but prescribe you more pain relief'. You are probably giving out very mixed messages when you see your GP. If you see him because of increased arthritic or neurological pain, when you are already seeing a rheumatologist and neurologist, what can you expect him to do other than increase the dullers? If you know he will only prescribe more pain relief, and you don't want that, then don't make the appointment.
If you have asked to be referred to a Pain Clinic, has he refused or is there simply a long waiting list? If you have no confidence in your GP the remedy is in your own hands – either see a different one at the practice or change to a different practice.

At the end of the day the pain we have is ours and we are the ones who get to choose how to deal with it, in conjunction with our consultants and GP and, of course, our husbands / wives / partners though mine only ever offers his opinion and always leaves the final decision to me. If yours is constantly pushing you to take more pain relief, have you asked him why? Perhaps he needs to talk about how it's all affecting him too.

Lubs

Hi sticky,

You are not wrong about the mixed messages, but I'm under a large cloud and sometimes thinking straight becomes a bit of a muddle.

I understand and support the idea about reducing my pain meds. I'm educated enough to know how they effect the brain etc, hence I phoned my surgery, spoke to a different, female GP who advised me not to come off them too quickly. Which was fine with me! I started to reduce them slowly!

Then came the headaches, but I still managed on the reduced morphine quantity. The headaches becomes really bad, and what I needed was diazepam just to get out of bed, a really nice doctor explained what was happening within the head while we attended A&E. This is when I had to come clean to my husband about the reduced morphine intake! Anyway, even with the pressure, I did not take the morphine back up to 50mg.

It's when the tooth pain started, at first I thought it was the jaw and could tolerate it, but no! Then I requested to go to the dentist. I couldn't open my mouth wide enough for x-rays to be taken, but enough could be seen to determine a gum infection, loose wisdom tooth and some other work that needs doing. She was very good and referred me to the hospital immediately, with antibiotics, but the pain is such, that I've had to slowly increase the morphine back to the normal dose.

The best fact is, the oramorph, doesn't come with a dosage spoon. I do not take the med, as my hands shake, so my husband gives me my dose. He uses a tablespoon, and gives me two lots, not a full spoon, but two tablespoons is much more than 5ml. I'd say I'm having anything between 8-10ml of oramorph each time I take the oral form of morphine.

Now, he claims it's my fault and my neurologist will be up set with me! :shock: well, my husband is the one who keeps up with the pain relief because I am constantly forgetting what I've taken, but this weekend he's worried that I'm very drowsy, I don't make sense with my sentences.

So, I've stopped the oral morphine, and am only taken neurofen, I place a hot cloth on the side if my face if the pain is too much and the slow release morphine is not doing much.

Sorry to go on! But I feel like I have no choice, I'm stuck in the middle!

dreamdaisy

I would have thought that a science teacher would be aware of the importance of getting measurements correct. A tablespoon holds 150ml, even if you are taking, say, a dessertspoon measure that is still 100ml, then times two? Ye gods. Your husband (no doubt well-meaning but a medical amateur) is over-dosing you so no wonder you cannot think straight. He is not helping you in any way, if anything he is feeding your addiction because this is the way you are heading. Reduce the oramorph slowly, confess all of this to the dentistry team and the neurologist - and inform your GP that you need assistance to reduce; hey must be made aware of the situation you are in. You need professional help to do this, it must be done very slowly because your body is reliant on the morphine and won't take kindly to having it removed. It took me nearly a year to come off my oral steroids - I reckon you're in for a long-haul but it's all of your own making (as was mine, I liked them far too much until a rheumatology nurse talked some sense into me. ) DD

stickywicket

Of course 'thinking straight is difficult' because of all the powerful narcotics but, nonetheless, it must be done, Lubs.

I hope you haven't just 'stopped the oral morphine' because, as I've said before, this must be done under close medical supervision.

As for taking two tablespoons of oromorph if 5mls was prescribed – there is really no excuse. A pharmacist would probably give you a free 5 ml dispensing spoon and they can be bought at most supermarkets' kitchenware aisle. If in doubt, with 5 mls, one uses a teaspoon not a tablespoon.

You really need to liaise closely and consistently with one doc about what meds you are taking. You should neither increase nor reduce them except as advised. It just isn't an argument to blame your husband because you forget what you've taken. You forget what you've taken because you've taken so much.

Please tell your neurologist all of this and the dental people too. It is very important. We all want you on the road to recovery and we will support you all the way.

barbara12

Hello Lubs
I had awful toothache a couple of years ago ..and my face swelled up something awful...when I eventually got an appointment the first thing he said have you been using heat..yes..so he said its the worse thing you can do because it swells the bloods vessel you should always use ice..I do hope you can get it sorted soon...xx

dreamdaisy

Further thoughts: your poor liver (which apparently was already under attack hence no meth or ijnfliximab for some time) will be struggling with this amount of pain relief (and possibly your kidneys too), you have probably invalidated any holiday insurance you have taken out and how do you think you will be able to fly to America? Even if you get there I doubt your GP will prescribe the amount of stuff you will need to take with you to tide you over.

I dislike sounding harsh, Lubs, but is time for you to start taking some responsibility for maintaining your health. I find it astonishing that because a measure was not supplied with the oromorph you therefore could not ascertain for yourself the correct dosage. If you were a child then a responsible adult would be supervising you but you are the adult here. I am very concerned for your welfare - in fact, I'm worried about you. DD

Lubs

Hi

Thank you for your comments. My husband thinks that I'm angry at him, but I'm not I'm more at myself for letting someone else have control over my medication.

I haven't stopped the Oramorph, although last night's dose was not given to me as he was surprised at the lack of Oramorph in the bottle. This is where the problems have started from.

I've had such a difficult night's sleep due to the lack of pain relief, on top of that I've got the arthritic pain, and the toothache. Ive just had enough!

But at 4.30 i got up and took a normal dose of 5ml of oramorph, and continued with my normal routine.

We are meeting with the neurologist today and I am telling him EVERYTHING to do with the medication - that's not all I have it written down on a sheet in my handbag, when the OH lady asked to see it she told my husband to go to boots to ask them for a dose cup for the oramorph. She was shocked at the amount that i was being given.

I can't open those bottles because you have to push the safety cap off, and my hands are not great when taking oral liquids. This is why he does it But we have both decided (well i have) that I'm in charge of the meeds and I have to get used to the bottles.

Hopefully, by the time the referral comes through for the pain clinic i should be half way to coming off these drugs. The Neurologists is great at helping and advising on how to do this - he helped me 5 years ago with the steroids.

Thank you for your advice. I'm hoping they will contact me soon to get this tooth out :shock:

stickywicket

You seem determined to be absolutely honest with your neurologist and I do hope you manage that. It will be a big step forward.

There is no reason why you can't take control of your meds dosage. You can buy non-spill dispensers online at Amazon if you can't personally get to a pharmacist. As for opening the oromorph – why inflict damage on your hands if it's difficult? Just take it to your husband and ask him to open it for you then take charge yourself of pouring the dosage. I have to ask my husband to get into my inhalers but then I'm OK. However, if you likely to be unable to remember when you last took some, you had better make a note each time and ask him to remember too in case you forget. It's all about being in control and having him as your helper rather than handing over all responsibility to him.

dreamdaisy

Hello, how did the appointment go? DD

Lubs

Hi,

The appointment went really well. In fact I told him about the various medications and how they are making me feel. Not only that I told him how they are making me aggressive. My husband was really shocked! He thought it was the condition not the medication!

The consultant noticed I was in pain on my left side of the face. I told him about the toothache, but he informed me that is not the tooth but nerve pain ( TRIGEMINAL NEURALGIA (TN)), so he asked for me to keep my dental hospital appointment, get x-rays, but not to be surprised when they say it's about some facial nerve beginning triggered due to my neck.

As for the meds, I'm slowly coming off diazepam, by going to twice a day, then once (at night) then not at all. I'm also coming off the pregabalin but changing for something more neurological, so I've had to continue with the morning medication of pregabalin then stop the pm to a Gabapentin 600mg tablet in the evening for a week. Then I will stop the pregabalin completely and only take the Gabapentin 600mg am and pm. I'm coming off the topirimate slowly, first to go is the am dose, then slowly they pm dose will stop.

As for the pain relief he says if I need morphine for the nerve pain to take it, but he thinks the Gabapentin will take care of the pain, so I have to wean myself off these tablets too.

The best thing is that he is not happy with the way in which my rheumatologist came to the conclusion of my illness, and he will be writing to her to explain herself (OMG I would love to see her face when she reads that letter), I'm sure the nurses will let me know the gossip!

He wants to treat me more under neurology not under rheumatology! I've got this constant pain on my left side of my face, but unlike tooth pain it's not consistent, it comes and goes, sometimes I'm ok but at others I'm up at 1-30am with such bad pain in my mouth it can't be real. Even using toothpaste, warm salty water, and mouth wash is causing my mouth to burn , so it can only be to do with the nerves!

Until I know more I really do not know what to say! I live life in pain!

Thanks for the replies even though some of them have been very tough to read!

I've needed the kick up the bum x!

dreamdaisy

Pain is the constant companion for the majority on here so you're not alone with that. It would seem that you are now more determined to manage your condition yourself - that is essential but please step your withdrawal from these very strong medications. Your body will need time to adjust to the lower levels - think in terms of weeks rather than days, yes?

I am sorry if I appeared to come on too strong but I was genuinely concerned by the huge intake of morphine - I could feel your fuzziness in your posts. The most oramorph I have ever taken was a medically supervised swig of 50ml before a knee aspiration and steroiding. That is one procedure which always has Daisy heading for the hills! I asked for sedation but, because it was being done in an ordinary clinic, they couldn't do that so suggested the oromorph. It helped.

I think it's time for you and your husband to have a proper talk (if you haven't done so already). He needs to understand more about the effects of the drugs, the way your illness makes you feel, and that this is affecting both of you. Fundamentally I guess you still have the PsA so I hope your rheumatologist is not too antagonised - professionals dislike having their methods and treatments queried by others who don't have their knowledge. Like many on here I guess you'll be under the care of two departments, it's not unusual. Good luck with it all, I wish you well. DD

stickywicket

I'm very pleased that you had a good appointment and doubly so because your neurologist has formulated a meds reduction plan for you. I do hope you will succeed in implementing it. Does this mean you will still be taking both tablet meth and oromorph? Did you explain how you'd been accidentally overdosing on the latter? If you are still taking it, please make a 5 ml dispenser your first priority today.

Presumably, wherever the 'tooth' pain is coming from, the wobbly wisdom tooth with still have to come out and the other dental work done.

I'm not quite sure, from what you write, whether your neurologist thinks that you have actually been misdiagnosed with psoriatic arthritis or whether he thinks you've been given the wrong meds. Either way it seems a bit odd. I hope the outcome works in your favour. I certainly wouldn't want to be the battleground for a spat between docs.

It would probably be a good idea to ring your travel insurance people to let them know about the meds change and the forthcoming dentistry. I'm fairly sure it won't make any difference to your insurance but it might make a difference to a claim if anything went wrong abroad and it turned out you had a problem and were taking meds they were unaware of.

I hope I've not been too hard on you, Lubs. We all live life in pain but how we deal with it can sometimes create more problems than it solves and I really don't want that for you. Arthritic life is complicated enough, isn't it

Lubs

Thank you for for your replies, no you both have been honest this is why I'm on this site rather than talking to my family, who like to sugar coat things, or tell you the wrong thing to do. It's takes a strong person to say the things and a strong person to listen and act on them.

The facial pain is beyond everything I've experienced, in fact you could bring back the toothache. I can't use strong mouth wash or tooth paste, so yesterday I went out and brought children's versions, which are much milder, but still sting my gums, tongue and cheeks. The inside of my mouth is very sensitive. I've burning tongue sensation, and I try to open my mouth further each day, so the dentist has some hope with the wisdom tooth.

As for the meds: I've finished my antibiotics, I'm down on my diazepam now 2 out of 3, topirimate is half the dose, pregabalin is also half the dose. I'm now going to slowly reduce my mst morphine to 40mg from 50mg, because I can deal with the tooth pain, it only gets bad if I touch it! Also the oramorph is reduced to three times a day, sometimes twice, I only take it if I need it and it's a 5ml dose (a found a pipette that I had at home - I sterilised it!). I'm now on 600mg gabapentin pm only this week.

I'm going to get onto the holiday insurance today, that is the job of the day. I'm very very slow in what I do, but I will get back to normal (whatever normal is for us).

I have been less aggressive, but more tearful! I don't and at the same time do know why.I do not have a mother who cares but a very lovely husband (thank god I married the man I did). I've never cared for my family but done what I want to, like this I managed to get a degree, teach, meet my husband and get married. There was a short while when we needed to stay with my mother, she charged us £500 per month ( for three months we stayed and then found this two bedroom flat where the rent was £550). Imagine her disappointment, whereas my brother (who is 30yrs) lives at home, rent free (has never paid rent), drives her new car etc etc. I haven't called my mother for a month or so now, but she did, which made me angry and now I'm a dish fewer, it just broke!

I know I'm rambling, sometimes making no sense at all. But what I guess I'm trying to say is that the only people I speak to are you and my husband. I don't trust anyone else! Sorry. So tell me off when I'm in the wrong!

Bye!
Lubs x

dreamdaisy

Just take things one day at a time and if that's too much then one morning, one afternoon and one evening at a time. Be honest with the insurance people, I'm not sure that you will be able to cope with the physical demands of a long flight but that has to be your choice. No wonder your mouth is so sore, it could be due to the meds and/or the over-brushing - I hope you've reduced that. DD

stickywicket

It 's actually tough on families too. They often want to help but lack the experience and knowledge that we have, plus there's always a bit of overhang from childhood so the emotional thing is complicated.

Well done on sorting out the pipette. You're getting there And also with your decision to sort out the insurance. One year I developed a hip problem that landed me in hospital for three days just before we flew out but the insurance people said that, as it had developed after we'd arranged the insurance, I was covered for a relapse. (Which didn't happen.)

I'm glad you have a good husband. They make such a difference. I'm sorry you don't feel you can talk to anyone else though. What about friends? No-one wants to ruin friendships by being a moaning Minnie all the time but one or two good friends, with whom one can be absolutely truthful, are one of the wonders of the world in my book.

Lubs

Hi,

We both had a big shock today, I've a rash on my legs, hands, hips and stomach (they are huge big blotches, which are raised. Very itchy at times, not always, and it's spreading). So we had to go through what I've changed, well not my shower gel or anything like that! So it's medical.

We narrowed it down to diazepam, I'm allergic to it! It can cause my throat to constrict, my left side of the tongue goes numb etc. so the lovely GP frightened my husband and told me if it becomes difficult to breath call 999 because it can take seconds to stop breathing! What About Stopping The Medicine Now? None didn't bother saying or mentioning that!

So because my neurologist wants me to slowly come off the diazepam over 3 weeks, I'm doing it in one week! I can't risk my life on this medicine. They've given me 10mg of antihistamine to take each day! But i'd rather get rid off it quickly, the rash has spread to my face now.

Other than that I'm slowly coming off the Oramorph as well. I think it shocked my husband into realising what I have to deal with the GP's. He wanted me out quickly and said 'we only have time for one problem in an appointment'. It takes two weeks to get the appointment, so what can I tell him about my burning mouth sensation! Nothing because we have run out of time, until my husband very calmly steps in and tells him, do you want us to book three appointments to waste your time and our tax payers money?

In the end I was seen for my ailments, but still felt very rushed. Like he had a 10 minute egg timer and he wasn't allowing me to speak, because he wanted to know about my history, not the current condition.

I have to move away from London!

stickywicket

Lubs, normal appointments are for 10 mins. If you need longer you're supposed to book a double one. I think that's fairly standard.

I hope diazapam is the culprit and it's now sorted.