When New Meds Go Wrong

It didn’t twig that it was the tablets …. Well not straight away, now I look back and it all clicks into place they were slowly poisinging my system.

The tablets name are Metoclopramide and the dose was 10mg three time daily.  So what is Metoclopramide it is a medication used mostly for stomach and esophageal problems.  It is commonly used to treat nausea and vomiting, to help with emptying of the stomach in people with delayed stomach emptying due to either diabetes or following surgery, and to help with gastroesophageal reflux disease.   It is also used to treat migraine headaches, which could have been really helpful !! (Most of this has been taken from wiki, so as to be accurate)

Now I read the leaflet inside, why am I taking it, top risk factors, and threw it away, though nothing more about it, I hadn’t been advised to “look out” for anything weird but then some weird stuff started happening.

Within the first 24 hours what I can only describe as gurning, pulling funny faces so much so that it was giving me cramp around my cheeks and lips, it was agony  ….. I was having to contort my face the opposite direction to try and stop the pain and then puff out my cheeks to stop the cramping.  As I laid in bed I arched my neck, so much so I could hear my vertebrae cracking, it was horrific, then my ribs and back started the same, arching and cracking, clicking and moving, which I can do anyway but it was getting worse, the fidgeting and constant motion was driving me and more so Andrew nuts.

Then my sleep, it’s gone from 6 or 7 hours a night to 3 and a half hours a night … So on Fathers Day …. I was in so much pain …. I got in a bath so hot I couldn’t stand up after, but it temporarily relieved a little of the agony.  Then it came back, I chatted to Andrew after taking yet more tablets, I had doubled my pain relief over the previous week too, so unlike me.  What had changed, my diet, this law histamine diet was new but food wouldn’t cause this agony, my new tablet, so I googled the name of it, I went to side effects on Boots.md and there it was every side effect I was experiencing, back arching, Parkinson’s like issues, it’s called Dystonia, having now experienced it, it’s awful, it’s chronic, painful and the sooner it goes the better, so I removed the tablets from my medicine trays and threw them away.  I found an appointment for 8:30am with a doctor and booked it, it said I needed to see a doctor urgently, I wasn’t not going to see Coldplay (Andrew didn’t know at this point) I was just going to muddle through the day as best I could.

Monday morning I got to the GP’s and he was glad I stopped the meds, I hadn’t seen this doctor before, but he had suffered Dystonia as a child and knew how horrific it was, I explained I was struggling but with the EDS it was just an added complication, he prescribed a new tablet, see new prescription below and we would take it from there.  He admitted theses types of reactions are rare but I seem to have been one of the unlucky ones, so I need to wait a few days and let this poison get out of my system.  In the meantime, I’m still fidgety in pain and not a happy girlie 😢

Happy Fathers Day

I had been plotting this weekend for some time with Katie, so poor Andrew had been completely in the dark.  All he knew was he had to keep the date clear !

Weeks before I had emailed Wembley Stadium with my details to organise the ticket purchase, being a disabled patron you are entitled to take your carer for free.  Now considering the cost of the tickets this is a bonus because to be fair we probably wouldn’t have been able to been able to afford two tickets where we were seated and I could no way have stood for the duration of the concert.  The booking agent at the time was brilliant, a little too quick to take my money, he didn’t tell me the location of my seats, I had to ask, and I also had to ask how much he would be taking from my card, basics I think when dealing with the public especially people on the disabled line who have a variety of pricing options, I was somehow just put into the most expensive?  My only other criticism I asked as it was Fathers Day if I could buy a third ticket, so Katie could come too, no it was only one carer one wheelchair, so imagine our upset when you get to the platform and fine one wheelchair with two carers, how is that fair??  Wembley sort it out, one rule for one on the phone and then one for the other when you arrive??

So tickets purchased, fantastic, Katie and I spent Friday night together, bought cards and planned the day, what we would do and how it would pan out, right we had in our minds what we wanted.  So Katie turned up and sprung the surprise, oh my god well the poor cats, they nearly had heart failure but we had a very happy Daddy on Daddies Day !!

We changed the plan for a meal, we thought we would go for something one evening in the week when it had quietened down, so Andrew and I headed to Wembley, we took a different route and missed all the traffic, I had pre-booked parking, that was a breeze getting in, so we went off to find a loo and then food.  We wandered into the upper deck of Cabana Brasilia Restaurant, now the security guard advised us, you need to check in downstairs but don’t worry we have a lift, the floor manager said not to worry wait he he would sort it, next thing we were whisked to a table.  No queues, no lifts, we had just been looked after beautifully, the buzz of this place was great, they had got a spotify playlist of Coldplay going so everyone and I mean everyone was singing or dancing or toe taping along, no body wasn’t smiling.  We ordered drinks and food and it was soon with us, it was good too and i don’t just mean good I mean gooooooooood !!

We headed off to the Stadium and Reef were on stage as we arrived, I have never been in the new Wembley i was awe-struck, it was amazing, a little chilly for me, but i was prepared and had taken a blanket to wrap around my legs.  Reef finished on “Place Your Hands” and we all sang our heads off.  Then after a short break a great young lady took to the stage with her band, Lianne La Havas, such a powerful voice that she had Wembley in the palm of her hand for four nights.  Then after a comfort break and a quick warm up at 8pm on the dot, Coldplay arrived and just blew my mind, this is the third time I have seen them live.  The first was at the 2012 Paralympic Closing Ceremony with Rhianna, the second was this year at Indigo and now at Wembley and I just love them, their energy, their music, their sound, the light show, the vibe in the stadium, it was amazing, at points I had tears streaming from pure joy.  My pictures are wobbly because I couldn’t keep still but they say a picture speaks a thousand words, so hopefully it will say more that I can type.

We left after over 20 songs, no encore but a fabulous, articulate speech from Chris, giving out words of memorium to those in Orlando and the family and friends of Jo Cox, he is such a humble man, i love Chris Martin and I don’t care who shoots me down, he admitted he had had a really awful day yesterday, and it wouldn’t take a genius to work out why, so I hope the crowd lifted your spirits Chris, as you lifted me right up….. thank you xx

Now leaving wasn’t as swift as arriving, two hours after getting into our car, we were just about exiting the Green Car Park, Wembley will blame the accident on the A406 but i will say if you opened up the entrance barrier earlier, then the gridlock wouldn’t have been so awful.  I called the police after 40 mins to advise them it was going to get heated, the horns were blaring in the car park after 30 minutes (not ours, I was listening to music) and this would be my advice, that if they let cars out the in, at we could get up “South Way” then we would be ok but we were stuck.  The guy took my recommendations and said he would pass it to Roads Policing, I just said get the stewards to do something, them wandering around doing nothing, isn’t helping tempers, just a thought?  He thanked me and I did explain it was my Police head on rather than seeing Red Mist descend from these idiots in ten minutes, half an hour, an hour.  He asked if i was “job” and I said no, ex I used to be PEC and a Special until I ended up “disabled” out of it.  Again he thanked me and passed me the reference number.  The irony was, we were the first car out of the entrance barrier when it was opened, I wonder if the Police had anything to do with that??

We finally made it home about half twelve and were in bed by one with a cup of tea but I needed to be up early as I had another Doctors appointment, this one was a bit of an emergency, my new medication had all gone a bit wrong.

What a fantastic day Fathers Day had been though.

 I can’t mark Father’s Day on the blog without popping a picture of my Daddy on here, miss you Dad and love you lots xx RIP

Weather Related Aches & Pains

It’s meant to be summer ???

The cold, rain and damp are just making my joints unbearable …. For the first time in what feels like forever I was in the car and I burst into tears from the pain.  I was sitting at traffic lights, I needed to arch my back and as I did my neck cracked, then my hip started aching, followed by a rib popping out and it all just became too much and the tears stung my eyes and I just burst into tears …. The people in the cars around me must have thought I was mental, I just couldn’t take the pain, from my hips, ribs, neck, back, knees and feet.  It just all got to me for that split second.

That night as we cuddled up on the sofa Andrew asked if I was ok, I was really struggling, I think he knew I was hitting a low, not for any deliberate reason, I just woefully cried I need heat, somewhere hot, I can’t live in this cold anymore.  With that I went and got my PJ’s on and a hot water bottle (in the middle of June I hasten to add!!!) and we snuggled up, he tried hard to comfort me but I was in a lot of pain, this weather needs to cheer up, in the winter I expect it but May to July I expect warmth and heat and sun !!

So come on Mother Nature play ball, help me, help myself and give me some Vitamin D, some warmth in my bones and stop making me want to run away to the sun !!

Home is where the heart is after all ❤️

Seeing Dr Mason

So after all that poking and prodding I was left in quite a lot of pain, it didn’t settle as quickly as I thought it should and over the weekend I logged onto our Online Access system.  It is brilliant because they are always adding or making available appointments, be it from people cancelling theirs, so when I saw an appointment free for Monday with Dr M, I clicked book straight away.

I knew I could get checked over and speak to him about the Professor Aziz consult, he always runs on time and I hobbled along as the weather was behaving. No sooner had I sat down then he called my name, now the only other issues I’m having is my medications aren’t working very well at the moment, so by the time I got the the surgery, my HR was over 110 BPM, I’m wearing a Fitbit now so keeping track of all my stats.

I got into his room and felt a bit lightheaded and disorientated but just got on with what was needed, explaining about th abdo pain, from the ultrasound and the consultation the previous week with the Prof.  I did say a letter would arrive and it would have a request for various medications, first he asked to examine my tummy, it was tender but ok, he had no concerns, ruling out appendicitis which I laughed because I told him that had been taken out in 2005.  He said he wasn’t sure that was in my GP notes so he would ensure that was in, anyway he was not worried and to try and let it settle, it might just be the diet changes I was trying to implement.  He said he was willing to prescribe the medication for gastroparesis without the letter from the Prof so let’s get straight on with it, Domperidone was not suitable due to an issue with one of my medications/conditions, as was another tablet, so we opted for Metoclopramide 10mg tablets, which I was to take three times a day.  This would hopefully work within two days, it could be the miracle cure for my gastric issues. I went feeling really hopeful and explaining that my Fitbit was part of my new positive mindset and personal rehab, he was impressed but asked me to take it steady.

I said I would be in touch if there were any problems ….. 

Urology Ultrasound

After seeing Mr Bhardwa in clinic he requested that I was sent for an ultrasound not only on my Urology tract but my whole pelvis, this appointment came through really promptly which really impressed me and along I went a couple of Friday’s ago.

I had followed the instructions to a tee, not eating for six hours prior to my appointment and ensuring that my bladder was full an hour before the allotted time of the slot of my scheduled appointment.  I just about made it to the hospital on time, no thanks to heavy traffic, when you have a full bladder and are under stress, that is not the mood to be in.  Anyway I got parked and made my way to the radiology department, I was asked to take a seat and sat willing them to hurry up. I was not comfortable at all.  Needing to urinate causes me discomfort not trigger a notification in my brain to tell me to go, which is why I think there is something wrong? Twenty minutes in and I was finally called …. I was asked to lay down and the cold gel applied to my tummy, the usual hushed tones and dark room, I couldn’t make anything out, in fact i couldn’t see a thing.  Finally I was asked to lay on my side so my kidney could be scanned, then deep breathes in, holding them and then asked to empty my bladder.  Only I couldn’t go straight away, I had to convince myself for a few minutes that this was what I needed to do !!  Finally it happened and I was able to carry on with the scan, back on the bed, empty enough and it was over, I was finished 

All I know was I was tender and needed to get home for some pain relief, all that poking and prodding had been a bit too much for me and my bits and pieces.  Anyway the report would be written and sent to my specialist, I just didn’t know which one as I was in between consultants.  So we will wait and see.

Seeing Prof Aziz

Next up was my annual pilgrimage to East London, to see Professor Aziz or at worse one of his team.  Having spent far too many stressful journeys sitting in the car in traffic, we decided that today we would try the Tube.  We parked at Westfield and then took the Hammersmith and City Line from Wood Lane, it meant no changes and took us straight to Whitechapel station in just over half an hour!!  My appointment was at 10:40am and we still managed to get to the hospital with time to get Andrew a cup of coffee and a Danish.

I was initially called through by a lady Doctor, who’s consultation was so insignificant I can’t remember her name!  She was so hurried and dismissive about what I was doing with my pain management, there were two other Drs in the room and we mentioned how I was trying my hardest to self manage pain, not to rely on the “hard” stuff but the pain was not improving.  My diet was critically poor and I needed support and advice with regards that, my local hospital were reaching out to Professor Aziz for advice as they were unsure what next, with that she just dismissed me.  I would need to be seen by the Professor and would have to wait in the waiting room, we trudged back outside and waited our turn.

Fifteen or so minutes later, Professor Aziz himself called me through, he was very warm and welcoming and I explained my frustrations, I said whilst I wasn’t the most complex case he had seen,  I was MY most complex case!  He got that I think, we went through my symptoms, he examined me thoroughly and then decided that as well as slow motility, gastroparesis, it was possible that I had Small Intestinal Bacterial Overgrowth Syndrome as well as Mast Cell Disorder.  With the advice of his colleague I was advised of a Low histamine diet immediately to help the symptoms and maybe stop them, then given a list of supplements to start taking to help build my immune system.

This was by far the best Gastrointestinal appointment  we have ever had, the first face to face we had with the Professor and we walked away feeling positive and upbeat.

That day Andrew didn’t go back to work he chose to spend the day with me in London, making memories and we had a wonderful time.  Thank you Professor Aziz for maybe helping get it right 🙂 xx

Gastro Appt@ KE VII

So after kicking up a fuss, I was put back on the “books” of Dr Levi.  An appointment was rushed through and I was seen within the month, funny that, it is often a case of he who shouts the loudest, gets the most done !!

We went along as planned to see the last consultant we had seen, he was only a junior Dr but I didn’t mind at least he knew what my history was.  I tried not to be hostile from the outset and I explained what had been going on and why I was upset, he had no idea I had been discharged from their care and had never been asked.  This dismayed me even more, that the last Dr to actually see me hadn’t even been part of the decision making process.

Anyway we discussed how things had declined and then plateaued out again, then started to drop again, I explained my frustration with the whole eating process and that I needed a “plan”  I told him I was seeing Prof Aziz the next week and whilst this would be a start it would not necessarily wave a magic wand.  What was the plan?  He said he would write to the Professor and between them they would work out how to look after me and my ongoing care, he promised I wouldn’t be discharged again I was too complex a case and I needed careful monitoring, he apologised for the mess up and we left feeling really cared for this time.

Hopefully our trip to London would be just as successful