I'm not having such a fun time at the moment. A couple of weeks ago one of my molars started to feel sore and rubbery when I chewed on anything. That tooth has given me so much trouble over the years, numerous fillings, root canal and last year a very expensive crown.
I went to see my dentist who said my root canal was having a spat, probably because I was run down after the cold I had at Christmas. one course of Amoxicilin later and it was no better so I went back and was given more antibiotics.
All medications have their side effects, I'm usually OK on Amoxicilin but this time it gave me a very dry mouth and I developed lots of ulcers on the back of my throat and tongue. I cope with it, dabbing Bonjela on the ulcers when they got really sore but unfortunately it has caused more damage than I realised.
Back in October my head and neck pain was flaring badly. I could barely function but I ploughed on anyway. I sat down with a cup of coffee and a biscuit but I had trouble swallowing, I started coughing and choking, I couldn't catch my breath. I phoned NHS 111 and they sent the paramedics. They said my oxygen saturation was good and asked me about my medical history, that's when one paramedic started questioning my apparent medical knowledge and asked me if I diagnosed myself a lot... Yeah, they thought I was a hypochondriac seeking attention. If only!
My GP phoned and told the paramedics to take me to hospital for "reassurance". I'm not sure what reassurance you can give someone who feels like they are being strangled every time they swallow but that's what happened.
I waited for an hour to be triaged, I was left in a very uncomfortable transport wheelchair and I was in agony. Another person in the waiting room fetched the nurse for me because they were worried about me. I was triaged and allowed to take my regular medication (which was an hour late) and then I saw the doctor. He made me explain my entire medical history. He glanced at the back of my throat with a torch, told me it was a muscle and that I should stop taking so many painkillers and do some more exercise.
Yeah, I wasn't exactly happy. I was 8/10 in pain but they wouldn't give me anything because I was already on oral morphine for the pain. The fact that I hadn't taken any because I didn't have a medicine spoon was beside the point. Apparently they couldn't give me anything stronger and they asked how I was getting home.
I was just as ill as when I arrived at hospital, I was physically and mentally distressed, they had offered no explanation or treatment and they were sending me home? I told the doctor I wasn't happy and that I wanted to complain. Then sent in the head of A&E who explained they don't diagnose chronic problems in A&E. As there was nothing blocking my throat and I could swallow sips of water there was nothing they could do so I was discharged, sobbing my heart out, choking every time I swallowed my own saliva.
I felt lost and alone, I was in so much pain and it took all my energy not to have a panic attack because every time I swallowed it was as if someone had their hands around my throat, throttling me.
I called a GP out the next day and was given Ompeprazole because she thought the problem could be reflux. I took it twice a day but it cause diarrhoea and depression. It didn't really help.
I couldn't eat properly for 3 days, I lost 5lbs in weight and I was very poorly but I had no-one to turn to for help. The pain in the back of my head and neck was so severe not even morphine was touching it but all my GP could do was tell me to wait for my Stanmore appointment in five months time. Yes, I was expected to wait with 9/10 level of pain for five months.
I complained about both my GP and A&E. A month later I got their responses. They did everything they could and they were sorry I wasn't happy with that. They didn't diagnose or treat me, they left me in severe pain and physical and mental distress, but they did everything they could?
Thankfully paying to see Dr Hakim explained the neck pain (severe muscle spasms) and he prescribed Diazepam which is very helpful, but I never got any answers about my swallowing issues, and now it's come back again.
If I eat anything that is dry or textured it gets stuck in my throat and I can't swallow it. I can just about manage oxtail soup, tinned peaches and creme caramel, which doesn't exactly constitute a varied diet but at least I'm not starving. Even eating this things causes discomfort and I'm struggling to drink enough water. My mouth is sticky, my lips are chapped but I feel like there is a brick in my stomach and a lump in my throat.
I did some research on the internet and discovered something called LPR - Laryngopharyngeal Reflux. Reflux is common in people with JHS but I don't get heartburn very often so I didn't think I had a problem with it. It turns out that I have many symptoms of LPR which include difficulty swallowing, globus (that's feeling of a lump in your throat) chronic cough, sore throat, post nasal drip and the feeling of something stuck in your throat.
If I could find this out in a few minutes on Google, why couldn't the doctors?
The bad news is if I do have LPR it is difficult to treat. Advice is to avoid coffee, chocolate, alcohol, fried, spicy and fatty foods - yeah, everything that is nice! I am going to see a doctor about it today and I'll see what happens. I need to do something, I am so weak I can barely look after myself, I've been having chills and sweats, my mouth and throat are painfully dry despite taking constant sips of water, my POTS symptoms are flaring up because I'm dehydrated, my sleep has been very disturbed and I basically feel very rubbish.
I need to turn things around quickly. It's my son's birthday party on Saturday and both of our birthdays next week plus it's my father in laws birthday too and we're having a big family party. I don't want to disappoint anyone but I know I have to look after myself. Let's hope the doctor can give me some advice and not just fob me off again... Oh yeah and I have to phone the dentist for something else for my infected tooth. The fun never ends!