Torture by nasal anaesthetic!

Today I have had one of the most painful experiences of my life.  I have had piercings, a tattoo, given birth and suffered nerve pain from a dying tooth but nothing, nothing compares to having Lidocaine sprayed up my  nose.

I know I sound like a wuss but it bloody well killed!  It was done nearly three hours ago and it is still stinging and making my nose run.

Why did I have Lidocaine sprayed up my nose?  Because I was naive enough to make an appointment with a local ENT.  It is not a mistake I will make again.

I haven't had the greatest start to the year, I had a cold over Christmas and then I had an infected root filled tooth which took 5 courses of antibiotics and a rather long and painful extraction to treat.  While all this is going on I've had trouble with a very dry mouth.  It's difficult to deal with, I wake up in the morning with my tongue bone dry, I can't swallow dry or textured foods as they get stuck in my throat.  My throat is very sore, my glands are up and I feel like I'm choking all the time.  It's not pleasant.

Five weeks ago my GP referred me to ENT.  I chose the first available appointment at Retford Hospital.  Big mistake. I filled out a reflux questionnaire,  the doctor briefly asked me a few questions.  I told him I'd had a dry mouth and throat, that I had trouble swallowing dry and textured foods such as fish or chicken, and that I had narrow sinuses and a deviated septum.  I had to explain what POTS and EDS were.  He scribbled a few notes, he didn't give me chance to explain very much before he took a quick look in my mouth and declared he needed to look down my throat with a tube and he'd give me some local anaesthetic.  I wasn't expecting him to perform any procedures and I was a little apprehensive.

I have trouble with local anaesthetics.  It is well known that Lidocaine isn't always effective on EDS people.  I told him that and he was like, "Do you want me to do this or not?  I have to look in your throat."  He didn't have the greatest bedside manner.  I explained that my dentist uses a plain, adrenaline free anaesthetic.  He found one and squirted it right up my nose. Cue me screaming in agony and my eyes watering like crazy.  I told him it burned, he told me it shouldn't burn.  It was a big shock to  my  body and I got rather shaky.  I was asked to sit in the room next door while the anaesthetic took effect but the shock and the pain triggered my POTS symptoms and I did my usual 'walk three steps and keel over' routine.

I didn't black out but the nurse tried to catch me as I slid down the door onto my knees.  There was some shouting, other people came in and sat me on a chair but I felt dizzy again and my vision greyed so they laid me down on the examination table.  They fetched a blood pressure monitor and said it was fine.  D'uh!  It normally is when I'm laying down!

They left me for a couple of minutes then a nurse came back with a form and said they wouldn't be doing the procedure today but they wanted me make an appointment for a barium meal swallow x-ray.  I asked why, it's got nothing to do with my dry mouth, swollen glands or sore throat.  She said it was because I had trouble swallowing.  The doctor had totally misinterpreted what I said about my swallowing problems.  The appointment had not only caused me pain and a flare up in symptoms, it had been a total waste of time.

I asked if they had any saline to wash my sinuses but the nurse said they didn't have any.  Yes, I was in a hospital that doesn't have any saline!  I was super weak and dizzy, my heart was beating like crazy and my nose was still on fire from the toxic Lidocaine but they let me go home.  Actually they asked me to make another appointment but there is no way I'm going back there!

I came home and phoned 111 (the new NHS direct number).  The nurse wanted me to go to A&E because she thought I was allergic but based on previous negative experiences of our local hospital I've decided to sit it out.  Three hours later and I still feel very shaky, I have fallen over a few times through POTS dizziness so I'm going to take it easy and take stock of everything before I write a very strongly worded complaint about the ENT doctor.  I appreciate he only wanted to examine me but something as simple as listening to the patient can often save a lot of pain in the long run.

EDIT

I just Googled the side effects of Lidocaine spray.  They include:

• Irritation at the application site
• Dizziness
• Drowsiness
• Low blood pressure

And it should be used with caution in people with damaged mucous membranes, hypovolemia and poor general health.  So in short, it's not a good thing to give it to people with POTS!

http://www.netdoctor.co.uk/medicines/xylocaine-vials.html

Austerity by stealth

Way back in 1997 I started on a Social Services scheme called Direct Payments.  My health was getting worse and I was struggling to look after myself and my home, so I asked social services for assistance.  At first I was denied any help at all because it was, and I quote, "Not essential to clean your house."  Yes, seriously, housework was deemed an unessential.  

I complained and I was eventually assessed as needed help.  Instead of sending a home help or carer out to me I was awarded a package of 10 hours and given a regular amount of money to be spent on meeting my assessed care needs.  I employed a care agency to take me out of the house in my wheelchair and do my cleaning and laundry.  My condition became more manageable as I could pace my activity and I wasn't stressing about the pile of dirty dishes in the kitchen or getting depressed about being stuck in the house on my own.

Over the years my health has deteriorated, my responsibilities have increased through having three children and my care package has increased accordingly.  Currently I use my direct payments money to employ a personal assistant, a cleaner and a child minder to take my children to school.  This arrangement works very well, it means I can keep on top of all my chores, manage my condition and even leave the house once in a while to go to the shops and do all those little things that fit and healthy people take for granted.

Last year a social worker came to the house to do my annual review.  It's usually a formality, my condition hasn't changed, I still need the same amount of help so that's that.  Except it wasn't.  Budget cuts and new assessment software meant I had to have a full assessment, but because I don't need help with personal care (ie washing, dressing, eating etc.) my budget was calculated as £0.00.  Yes, nothing.  I appealed, had a rather challenging meeting (especially considering I had a fever and was shivering like mad) and my existing package was reinstated.

Fast forward to this year and I get a call from a different social worker who wanted to do my annual review.  Let's just say it didn't go too well.  Apparently I'm not allowed to pay a cleaner to do six hours work a week because policy says I can only have three.  That's three hours a week to do all the household chores for a family of five, including cleaning, laundry and food shopping.  

Have you stopped laughing yet?  Well I've got another funny for you.  I'm also not allowed to have someone go with me to medical appointments because that need is met by DLA.  I claim Disability Living Allowance Higher Rate Mobility which I use to lease a Motability car.  It's a fantastic scheme but unfortunately the nice Renault Grand Scenic on my driveway is not capable of getting my mobility scooter out of the garage and putting it in the car, or driving me an hour to Sheffield to see my specialists and physio, or opening the door when I need the toilet or going to the cafe and buying me a bottle of water when I'm tired and dehydrated, or any of the other things I need help with when I go to a medical appointment.

I really wonder who makes these policies.  The social worker said the County Council have to cut several million from the budget.  It's rather convenient that they take that money off the people who are least able to challenge it.  I wonder how many cuts the top level managers are suffering?  Are they allowed to have more than three hours a week to clean their lovely homes?

I've got to wait to hear the result of my review.  If my package is reduced I'm going to appeal, but right now I don't have the time or energy to deal with this.  My health is pretty poor at the moment and I need to get well enough to start physio next month.  Stress is not my friend so I'm trying not to worry about it, although it's always nagging at the back of my mind.

Fingers crossed!

You have to laugh sometimes!

On Friday I went to my GP and before I'd even sat down she said she was a bit bemused by something on my computer records.  I took a look and there it was on the screen:

Ultrasound 6/40 Viable

My GP asked me if I was pregnant and I burst out laughing.  I said it was very unlikely considering I had a hysterectomy in 2010!

The surgery has never been very good at keeping records, letters can take two weeks to get processed (that is if they aren't lost, filed in the wrong place or shredded before anyone has the chance to read them) but this takes the biscuit.

I assured my GP I was NOT pregnant.  She presumed the ultrasound result belonged to someone with a similar name and had been put on my record in error.  We had a laugh about it but it didn't fill me with much confidence.  What if it had been something that needed urgent attention?  It doesn't bear thinking about.

I know I moan about my GP surgery a lot but they did redeem themselves this morning with their efficiency.  I had a blood test done on Friday to check my vitamin D levels.  It's Monday today and the surgery just called me to say they were 24 and should be over 75 so a prescription for Adcal D3 has been left for me at reception.

I've had low vitamin D before and I'm in two minds about taking the medication.  A couple of years ago my level was 14, which is classed as deficient, and I had to chew the chalky 'fruiti tutti' flavoured horse pills every day.  They didn't make me feel any better and when I was retested and found to have normal levels I stopped taking them.

There is much debate about vitamin D on the internet, some say it is best absorbed from sunlight, not that we're getting very much of that in England at the moment!  Others say it's best in liquid form.  I have no idea what to do so I think I'll give the pills another try and do a little more research.

One other thing.  I went to see my GP about the carpal tunnel testing, I explained I had numbness in my little fingers and she agreed with me that the problem was likely to be with my ulnar nerve and not carpal tunnel as the doctor from Stanmore suggested.  So I don't have to wear the wrist braces but I do have to have the same nerve conduction tests, which I'm not looking forward to, but at least I'm moving in the right direction.

I'm a terrible mover!

Apparently I'm a terrible mover.  Normally I'd take something like that as an insult but the comment was made my an expert physiotherapist and she is going to help me get better control over my muscles.  Yay!

Yesterday I went to Northern General Hospital in Sheffield to see Mr Stanley.  It was the shortest consultation I've ever had.  I walked in the room shook his hand, he said very nice to meet you but you need to see my physiotherapist and he asked me to go back to the waiting room.

It wasn't a wasted journey, I saw his physio and it was a very worthwhile consultation.  She gave me a proper examination and declared that my joints were very lax, my posture was awful and my control is poor because I am using momentum to move.  It's going to take a lot of work but hopefully I can make some progress.  I had an x-ray of my shoulders just to rule out any anatomical reason for my problems but thankfully my bones are fine, it's just the soft tissues that are rubbish.

It was interesting discussing the things I've been told in the past.  Two years ago I was diagnosed with shoulder impingement, the physio told me it is always down to lax joints in people under 40 (I was 36).  I had also previous been told to do stretching exercises but she said they weren't going to do me any good.

I'm very grateful I've found someone who can finally help me.  She asked where I'd like to be in two months time.  I said I'd like my condition to be more stable because at the moment I'm constantly battling something or other and I just can't carry on like this.

I'm still suffering with a very sore throat and dry mouth.  The spray helps a little but I just feel completely dehydrated despite drinking four litres of water a day.  I've been getting headaches and sinus pain too and my tooth still feels rubbery when I bite on it.  I don't think this problem is going to go away any time soon but I have to wait another three weeks before I see an ENT.

I have been Googling my symptoms again and asking on forums.  The top possible answers seem to be Sjogren's Syndrome and Sarcoidosis.  Unfortunately they are both difficult to diagnose and treat so I hope it's not that.

I do get very frustrated that I am left to research my own health problems and diagnose myself.  If I had not directly suggested POTS and JHS to my doctors I would still be suffering under a vague diagnosis of ME/CFS and not receiving the treatment I need.  At least now I seem to he heading in the right direction.

Merry-go-round

I feel like I'm stuck on a medical merry-go-round and I want to get off!

Yesterday the GP told me to see my dentist about my very sore, dry mouth and throat.

Today I went to see my dentist and he told me to see my doctor.

*HEADDESK*


My dentist was very helpful, noted that I had a bone dry mouth and swollen glands and recommended two treatments, Glandosane (artificial saliva) and Augmentin (an antibiotic) which unfortunately as a dentist he was unable to prescribe.

I went straight up to my GP surgery and was very lucky to get in to see the same doctor I saw yesterday.  She prescribed the drugs and is sending me for blood tests to check for inflammation and check that my iron and B12 levels are OK. I also have an appointment to see an ENT, but I have to wait four weeks for that.

The artificial saliva has helped already, I just hope the antibiotics work because I'd fed up of being ill like this.  I want to live my life, not just sit around waiting for get better, only for something else to knock me flat again :(

When symptoms collide

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.

WHAT?

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?  

B***S***!

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!

NHS Bureaucracy gone bonkers

I know most of my blog posts sound like a rant against the NHS.  Don't get me wrong, I am very grateful that we get free medical care here in the UK but as the saying goes, you get what you pay for.

I was diagnosed with Joint Hypermobility Syndrome by Dr Hakim on 14th November 2013.  I paid privately for the consultation.  A couple of weeks later he wrote to my GP detailing the consultation, my diagnosis and most importantly a treatment plan.  He said I needed 12-18 months physio on everything from my lower back down to my feet.  His physiotherapist at the Hypermobility Unit had recommended an NHS physio who worked at Northern General Hospital in Sheffield.

On 5th December I saw my GP and she agreed to refer me to the physio at Northern General.  I was very happy and hoped I wouldn't have to wait too long for an appointment.  Yeah, sometimes I am a hopeless optimist, but you have to think positive...

Last week I telephoned the Northern General to find out what was happening.  They said they had no record of me on their system.  I was passed onto to someone else who explained that physiotherapy don't accept GP referrals and the letter had probably been passed on to Mr Stanley.  I was told I should hear something later in the week.

Today I got a letter from Northern General.  It's an appointment to see Mr Stanley, who is apparently an orthopaedic surgeon.  I guess I should be pleased but I can't help but feel annoyed because I don't need to see an orthopaedic surgeon.  I have my diagnosis and I have a treatment plan.  I need to see someone who can carry out the treatment plan.  That person is a physiotherapist, not an orthopaedic surgeon.

It seems ridiculous that the NHS are sending me to see a consultant just so I can access physio.  It's a waste of NHS time and money, and it's a waste of my time too.

With mindless bureaucracy and poor organisation no wonder the NHS is struggling.  I keep thinking of all the people desperately waiting for a orthopaedic consultation when I'm getting one and I don't even need it!  It's stupid but what can I do?

All I can do is use up another day of my husband's holidays, get my mum to babysit the children and go to Sheffield for an appointment I don't need to hopefully get on the waiting list for an appointment I do need.