Please can anyone help me make sense of these odd symptoms?

[CasaBevron]

Okay, I know I have been all over these boards lately with various weird stuff going on in my mouth but today it's come to a bit of a head and I need to try to make sense of it and I hope someone may be able to offer their experience...

Apologies, it's really long (as usual)

For the past four weeks or so, my tongue has been feeling as though I've burned it. It's not overly painful but just the tip and sometimes down one side feels like I've eaten something hot or really peppery. This has got worse in the evenings and after eating. Having looked around, and put two and two together, I think I am lacking in vitamins. I started to take a supplement at the beginning of last week and the symptoms began to subside.

Alongside this, the weekend before last I ate a couple of ds's peanut snacks and within half an hour felt a strange numbness in the left hand side of my top lip. No itching, tingling, rash, swelling etc etc, just a numb lip. I panicked and thought 'omg i'm developing a problem with peanuts' and took some Piriton. This made no difference at all, and the feeling remained for approx four hours before fading. Later on, in the evening, the same part of my lip started to tingle and faintly itch as it would if a coldsore was developing. Again, the next morning I felt as though my lip was a bit numb but not to the same extent as the previous day.

After this happened I saw the doctor who prescribed me Aciclovir for coldsores. Within a couple of days I started to experience facial tingling and numbness in the evenings - the feeling would start like a tightness in my cheeks and travel down my face until my bottom lip felt as though it should be swollen, but it wasn't. I stopped taking the tablets and the doctor put on my notes that I had an allergic reaction to them. I'm not sure I agree with this as surely if I was allergic I would react every time I took a tablet? I had to take five tablets a day and would not get this feeling until the evening.

Alongside this, last weekend I was feeding ds and though I must give him some peanut (we have to keep up his intake to try to stop him becoming allergic on the advice of our specialist - he is egg and cashew allergic) when I started to get the strange facial feelings again. I was panicking I think that I would have to come into contact with peanuts when I had had the strange reaction to them the previous weekend. Since then, whenever I think about peanut I get the tightness in my face and tingling sensations etc as though I am going to have an anxiety attack. My stomach is in knots too. So were the symptoms I was experiencing when taking Aciclovir actually down to the tablets or were they the beginnings some sort of anxiety coming over me? I don't think I was even thinking about peanut and my odd experience when it happened the first couple of times .

So, today, I thought to myself I must stop being so silly and just do something about this. I am a rational person and I will not start to be taken over by these feelings of panic. I went and got a small blob of peanut butter on the end of my finger and ate it. Nothing. Great, I thought, nothing to worry about. Twenty minutes later, the same feeling in the same part of my lip. Just numbness, nothing in my mouth or throat, no swelling or itching, etc. and again no response to piriton. It lasted about two and a half hours and then faded. I should add that I have eaten tiny amounts of peanut butter in between these two incidents, just tiny amounts on the end of my finger, but had no reaction to these. I have seen the doctor again today and she has taken blood for RAST testing and also to test for vitamin deficiencies as another possible cause of the mouth symptoms. Her attitude is that it is almost certainly all in my head because I am getting myself in such a panic and also ds's allergies are just starting to sink in...She thinks that if it was an allergic reaction it would be across the whole of my lips and mouth rather than in just one area. Since I have started thinking about it again this evening the same area of my lip is feeling numb again, so I am starting to wonder if it is all in my head??

I am so grateful if you've just ploughed through all that, thankyou! I just think I need to get everything down so that I can explore all possible explanations. I know that all I can do is wait for the test results to come back, but I also know that I will drive myself mad in the meantime if I don't try to get some feedback from people who are experienced with allergies. So can anyone tell me -

• Can an allergic reaction be so localised to one area of the lip? Would you always expect to experience tingling/itching/swelling etc?

• Does the reaction that started when I began taking the tablets sound like an allergic reaction or would you expect it to happen every time I took a tablet if it was an allergic reaction?

• Is it possible to 'think yourself' into physical symptoms? Even if you don't feel worried or panicked at the time?

I know I must come across as a total lunatic and I will probably just slink away in embarassment after this - or at least namechange! - but I am so confused about what is happening to me and would be really appreciate some input if anyone has managed to get this far...

TIA

Well, I certainly don't think your a lunatic, but I do think you are perhaps getting yourself into an unnecessary cycle of worrying. You have had so much to take on board recently, and it's hardly surprising that your worry-circuits have gone into overload

Yes, it is totally possible to 'think yourself' into physical symptoms (this is sometimes called the nocebo effect).

I don't think your symptoms sound like the beginnings of a dangerous allergic reaction. It's even possible that worrying about your lip tingling is some kind of way of stopping yourself from worrying about your DS's allergies (which do seem to be very real!)

However, I really, really don't mean to be dismissive, and I do understand that you are concerned. I will admit that I too have sometimes wondered if I am becoming sensitised to some of DS's allergens through avoiding them for so long (have been breastfeeding him for three years now and was always intolerant to cow's milk). On a couple of stupid occasions, I have found myself lying awake at night, wondering who would take care of him if anything happened to me - but this is pointless worry and these days I am simply refusing to waste any nervous energy on it. I have enough to deal with on a day to day basis!

Like me, you probably now know exactly what you should do in the case of an allergic reaction. You probably have medication with you at all times.

Hope you feel better soon.

P.S. There's no need to slink away / change your name. These allergy boards are wonderfully supportive, and I think you will be forgiven for getting yourself into a state - we all get into a state sometimes!!!

Thanks so much for taking the time to read! You are right, I probably am now into a 'cycle of worry' - I keep coming back to how I would cope if I was allergic - I don't think I would dare eat when it was me alone with the kids! And how would I be able to keep giving peanut to ds if I had to avoid it myself?? If it was me on the outside I would say the lip thing does not sound like a reaction, but I don't know what else it could be and why else it would only happen when I eat peanut? God knows how long the results will take to come back, i'll probably have driven myself half mad by then :-( The thing is, this isn't me, i'm totally rational and no nonsense in day to day life and I seem to have just lost it completely!

Hmmn, I honestly don't know.

Numb lips can absolutely be the symptom of an allergic reaction, even without itching and swelling. Strange that the Piriton had no effect though.

Equally, the mind is a powerful thing and having a child with allergies is v. stressful (I used to have panic attacks when ds1 was first diagnosed).

Please don't eat any more peanut til the results are back. Get someone else to give it to your ds - you can always do that if you do have an allergy, so no need to worry on that score.

If you are allergic you will cope - much less worrying in yourself than in your child.

If the test comes back negative then perhaps you could do a blind challenge. Take yourself, a friend and 3 identical snacks (one of which contains peanut-put sunflower seed paste or something similar in the others) to somewhere where medical help is easily available (GP/A&E) are get your friend to administer the snacks 45 min apart. You obviously don't know when you get the peanut one. See what happens. If you pass that, then you know its not peanuts.

I was given a provisional diagnosis of coeliacs disease the month ds1 finally outgrew his nut allergy which shows Old Mother Nature has a strange sense of humor at times.

Indeed

I am really hoping that there'll be another explanation, but I suppose I'm just mentally trying to prepare myself for crap news. It's ironic, the number of times I've wished I could take on ds's allergy for myself - I didn't want one to go along with his!!

Had questions, but ds woke up!

Can I ask how you dealt with the panic attacks? I thought I had 'thought myself out' of the anxiety when I managed to persuade myself to try the peanut butter but obviously that's gone out of the window now. Even thinking about asking dh to give ds some of the bamba snacks has me shaking! I did try to explain to the doctor how it was affecting me, but I think she just saw it as a case of 'get a diagnosis and then see if you need to be panicking' which isn't very helpful in the meantime...to be honest I'm half-expecting to wake up Dallas-style sometime soon. If you'd told me a year ago how things would be turning out now I would have absolutely refused to believe you - all I wanted was a second child!

Thankfully, I only had 2 full-blown ones - I used a paper bag to stop the hyperventilating.

Other things I did:

Found this allergy board - at least people on here will understand, which tbh was more than most people in real life did.

Slightly more radically, I gave up work. Ds1 was allergic to milk and peanuts. My mum had been looking after him full-time when I went back to work but that was only ever a temporary arrangement and I just couldn't face putting him in a nursery/with a childminder, was far, far too scared (milk allergy in a baby is really the pits cause the damn stuff is everywhere, especially where babies are. Even now I find it strange that people give baby poison cow's milk to babies, which shows how allergies can warp you view of the world).

Of course lots of people with allergic children put them in nursery etc and it is fine but I just couldn't and because I was in the fortunate position of not having to, I didn't. Never planned on being a SAHM, but it definitely helped me to be the one feeding him/watching him around other babies bottles etc.

To be honest though, what helped most was time. Ds1 has outgrown most of his allergies now but even before that happened I had just got used to dealing with them. Once he was old enough to understand and help keep himself safe that made things easier too (although then you get the heartbreak when they can't join in at a party or something - my heartbreak, ds1 was always very good about it).

If you find your anxieties do not subside to a tolerable level (irrespective of whether you now have a nut allergy or not) please go back to your GP and ask to be referred onwards for counseling. A friend of mine is doing similar following her ds's diagnosis of diabeties and it is really helping her.

'at least people on here will understand, which tbh was more than most people in real life did.'

You are so right, I know my dad just thinks I'm mental! He keeps looking at ds and saying things like, 'look at you, you're a picture of health!' Yes dad, he is until you feed him egg or nuts - how hard is it to understand that someone with allergies doesn't have to be walking round all day looking like they're at death's door??

I also feel very lucky to be able to stay at home with ds. I think I would be going out of my mind now if I had to leave him with somone else. As it is, I have sat and licked some envelopes tonight and I'm now sitting here fighting the urge to panic. After about four envelopes the idea that I might have an allergic reaction to the gum on them popped into my head, and I started to feel the area of my lip that was numb when I ate the peanut throbbing. I know that there is nothing going on, but as soon as I start to think about it, my whole head starts to feel tight, my stomach is doing somersaults, and my lip is starting to hurt! Standing on the outside and looking at myself being a total idiot, I cannot believe the way I am behaving. I think that whatever happens with my RAST results I am going to have to try to get some help from the GP. I can't live like this

Well, today bought new weirdness

I gave ds his lunch - philadelphia on bread - and had a coffee while he ate it. When he didn't want it all, I ate about half of his slice of bread and cheese. We then set off for the supermarket. On the way I started to feel my lip again. It felt as though it was throbbing and was quite painful. I always carrry piriton, so I took some to see if it made any difference. Nothing - the whole episode lasted another 50 minutes. The pain moved from my lip up into my cheekbone and under my eye then back down to my lip. If I rubbed the painful area the feeling would disappear, then return again. I stood in the till queue feeling as though I might faint - I was amazed to still be standing when it came to my turn!

So this time I hadn't been anywhere near a peanut. The bread and cheese are no-nut-warning foods and the coffee was a nescafe cappucino sachet (I know, but it's my guilty pleasure) of which I drink two or three a day. Clean knife straight ou of the dishwasher, same with ds's dish, etc etc. It happened about half an hour after eating, as with the other two times, but I wonder if this is a bit of a red herring?

Dh thinks it is some sort of stress-related 'headache' - last night when I could feel my lip starting to throb I took a paracetamol (I have a cold) and it did stop . He thinks it is all tied in with the mouth symptoms/poss b12 deficiency etc. I have read that low levels of b12 can cause neurological symptoms so I suppose I can see where he's coming from.

What I can't get my head around is that if it was an allergic reaction, surely it would not always be isolated to the same area of my lip every time? And wouldn't Piriton have at least some effect on it?? I would also expect to feel some other symptoms but there was definitely no tingling, itching, swelling etc. I felt as though I'd been punched in the face and if I looked in the mirror I should see swelling but there was nothing.

Now I don't know what to think...!

I don't want to sound flippant, but do you drink a lot of coffee?

I KNOW what it's like to be anxious because of health worries/DCs allergies.

I also cannot tolerate caffeine.

It gives me horrendous headaches, nausea and palpitations/feeling of faintness and ulcers in my mouth (ironically, I own a coffee shop!). Any of this familiar?

If not, feel free to ignore. I have no idea why you are feeling this way, but I have a strong suspicion it is a combination of factors...

Listening regardless, i hope you find some support on these boards.

Wow, I had this five years ago, it came and went and came and went just like yours (though I never associated it with allergy) all exactly the same symptoms, then in the middle of the night one night I woke up and realised the whole of the left of side of my face and even all through my scalp was like it.

It lasted 5 months, gradually fading away.

I saw drs and even neurologists and nobody ever knew what the fuck it was. It was suggested it might be some kind of migraine (I do suffer from classical magraine too) or it could be MS (try not to think about that) but that it is probably just anxiety related. I have suffered from bad anxiety since my teens and I am starting to find it is fucking up my body quite badly, so I do think that is the most likely explanation.

I still get in occasionally now, when I am very stressed/tired/run down/anxious but it never lasts more than a few hours a day at most.

Hope yours goes away, you have my sympathies, it is not at all nice.

Really does not sound like an allergy.
Could be viral? ?bells palsy or trigeminal neuralgia.
I would see your again, this could be and most probably is something completely unrelated to allergy.

Migraine could b another reasonable cause

Thanks for your suggestions guys. I think I automatically thought allergy as its all I bloody think about these days That, and the fact that it only happened after i had eaten peanut...I'm actually quite glad that it happened today when I had been nowhere near any peanuts. I felt so low when I posted last night at the thought of what might be happening to me.

A few months ago, when we still didn't know what ds's allergies were, and he was coming up in random hives after every feed, dh started to get ocular migraines and back pain. We are normally two of the most laid back people that you could hope to meet, and it took a lot of persuading from his doctor to convince him that he was suffering from stress. When we got a diagnosis and we knew what we were dealing with the symptoms all disappeared, so he's suggesting that this is now what's happening to me.

I'm quite happy to buy into the stress theory, believe me, it would be infinitely preferable to me developing an allergy to the one thing that ds has to keep in his diet. Nellymoo, I have always been a coffee addict, and it's about the only thing that's keeping me going at the moment! Can't imagine the torture of owning a coffee shop and not being able to drink the stuff

Have already seen the doctor three times in the last fortnight. They're going to be sick of the sight of me!

My2p worth:
Not responding at all to piriton indicates not an allergy
Have you looked at the symptoms of trigeminal neuralgia?
Anaemia, Hypothyroid and B12 deficiency can cause paraesthesia (the tingling/numbness)
I would ask for full blood count, B12 levels, thyroid hormone levels

Thanks sayjay, the doc took blood to test for vit deficiencies etc. which I hope will come back within the next week or two. With ds's issues I have had a really crap diet for the last six months or so, I was afraid to eat a lot of foods for a long time so it may indeed be that this is now coming back to haunt me...

Well spoke to the surgery today and the first lot of tests came back normal, so no vitamin deficiencies etc. Bang goes that theory

hmm
have they checked your thyroid?
are you still getting the symptoms?

I've only got a couple of ideas which may at least be contributing, and have already been mentioned. Caffiene intake; I use to down coffee all day with no problem up until a few years ago when I realised it was giving me panic attacks.

Also look into migraines. A friend of mine would have episodes where half of her face would become paralysed. Went for brain scans etc. but they found out it was migraine in the end. Migraines can have a huge range of weird symptoms.

I've been to the doctor's this morning and he's diagnosed depression. I'm pretty floored by this tbh, it just doesn't feel like the sort of thing that happens to me! (Although this wouldn't be the first thing that feels as though it just doesn't happen to me I suppose...) I am being referred for CBT, and have a visit from the HV next week in the meantime. The doc thinks that a lot of the physical symptoms may sort themselves out if we deal with the major issue. So, at least I know what I am dealing with.

I am actually fairly sure now that the rast will come back clear, as I am starting to get the facial symptoms more and more as I start to become more anxious about everything that goes into my mouth . If I put my mind to it I can think them away before they get too bad, but I am pretty certain that this is what is happening rather than a food allergy. I think I'm going to have to step away from these boards for a while as I seem to be massively over-thinking everything and seeing others experiences is really not helping me to stay calm! Thanks everyone for taking the time to read and post. Hopefully I'll come through the other side of this sooner rather than later...

Hope you feel better soon.

Just a little bit of info that might be of interest - I have a form of trigeminal neuralgia which I have had for over 30 years which at worst sometimes flares up and I have terrible pain in the left hand side of my face but luckily generally it takes the form of tingly prickly numb feeling on the left side of my whole face. If you could draw a line down the centre of my face it is affected up to the middle of my brow the left eye, the left side of my nose my lips on left side to the centre and my left side chin. I have this all the time but the degree of tingling/numbness varies. Just thought it sounded similar - without the peanut allergy bit though!! But it is affected by jaw movements I have found!

CBT is really useful for that kind of thing CasaBevron, I'm sure it will help. It's amazing how powerful the mind is and what tricks it can play, I've been there myself. I used to worry and over think everything, only Prozac helped in the end and it's been such a relief to be able to think clearly and rationally.

Good luck, hope you feel better soon x

Thanks guys