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STARS Patient Information

Michele's story

Hi, my name is Michele, I am 56 years of age and lead a relatively normal life, although I will leave you to decide on that.

Firstly, (just so you understand my story) I have Coeliac disease as well as a new pacemaker. I know, I know, you are reading this in the hope it will be an article to which you can relate to, not an item about different unrelated medical matters, but please bear with me.

For those of you who don’t know what Coeliac disease is I shall explain, (if you continue to read on you will find it is relevant to my story). It is an intolerance to gluten and wheat which damages the lining of your small bowel. This then prevents you from absorbing vitamins, minerals, nutrients etc from your diet. Eating food containing gluten or wheat can make you quite poorly.

So, where do I begin - The Diary of a 56 year old who couldn‘t stay on her feet.

Around 3 years ago I had gluten free muesli for breakfast. All should have been fine. However, around lunchtime I felt quite tired and nauseous which lead to sickness and diahorrea. This left me feeling exhausted and totally cold. It was at this point I collapsed on to the bathroom floor. Around mid afternoon I awoke and managed to crawl on my hands and knees and get into bed. This was where my husband found me at tea time when he returned from work. I was still very cold even though I was under the duvet. In order to get me warm my husband and daughter used the hairdryer to blow warm air into the bed. I then slept until the following morning when once again I was back to my normal self. Convinced myself there must be something in the muesli I have reacted to. 

We now move on in time to July 2011.
Once again I had a gluten free muesli for breakfast (different brand to last time). At lunchtime I left home to visit my mother. Around 12:00 noon I had a cup of tea and a gluten free biscuit at my her house. An hour later I began to feel tired and said to my mother that I would have to go home as I was not feeling too well. I felt tired and nauseous again. Once again exactly the same happened as previously. I collapsed in my mother’s living room where I lost complete use of my body and could not move at all. My daughter arrived and tried to move me back into the bathroom. I remember her asking if I could try move myself with her help and all I could say was “give me a minute and I will try. Apparently she had already asked me this and a half hour had passed. I had no concept of this lost time. She sent for an ambulance and they spent 40 minutes outside my mother‘s house trying to stabilise me as my blood pressure had dropped really low, I was hypothermic and my heart rate was really slow before they could take me to hospital. I was connected to a drip fitted and had blood taken. Around 8:30 that night I was allowed home as once again I was back to my normal self. No more muesli for me, there must be something I can’t tolerate in the stuff.

Friday 12 August.
I arose around 6:30 feeling fine. Around 7:00am I began to feel very dizzy. Once again I collapsed experiencing the same symptoms as before. My husband called an ambulance and once more I was taken to hospital. This was becoming a habit and not one I was enjoying. I was admitted to hospital as it was thought I may have Addison’s disease. A test was done which came back negative. A very nice and well meaning Doctor did say that if my slow heart rate should be the problem I was not to worry as it was something which could easily be rectified by fitting a pacemaker. In my confused state I remember saying to him, “I thought you were here to make me feel better”. I never thought I could have any problem which would require a pacemaker. Surely, they were for people with heart problems, not people who kept collapsing. How wrong could I be!

Saturday 13 August.
Recovering in hospital, but felt ok.

Sunday 14 August Still in hospital.
I awoke feeling fine and was ok until lunchtime. Once again I started feeling dizzy and I called for a nurse. The diahorrea started but no sickness. From there on in I have no recollection of what happened to me apart from what others have told me. I was given oxygen, Atropine for my slow heart, put on a drip to help with my low blood pressure and wrapped in foil and blankets as I was hypothermic.

Monday 15 August.
A 24 hour heart trace monitor was attached.

Tuesday 16 August.
Still in hospital.
Around 5:00am the symptoms started again. A doctor was called. This time I managed to stay awake and speak to him although I was extremely tired. Slept for rest of the day. 

Wednesday 17 August.
Still in hospital (beginning to feel like it home). I was taken by wheelchair for a CT scan of brain and bowel. I had to drink the fluid required for the scan which made me really cold. This doesn’t normally happen. I had to be moved from the wheelchair to a trolley as I was shaking uncontrollably.

Thursday 18 August.
Discharged. Still no nearer knowing what is causing the collapses. 

Saturday 20 August.
Early hours of the morning I went to the bathroom. I felt sick and really cold. I managed to get back to my bed and promptly fell asleep until the following morning. I was left tired but ok.

Tuesday 23 August.
Mid morning felt sick and dizzy. Went to lie on the bed with my feet raised as told by the hospital to do. Once again I became really cold and got under the duvet. I awoke an hour and a half later. Once again I was ok, just tired and worn out.

Monday 12 September.
Returned to work but was really tired when I came home.

Tuesday 13 September.
Went to work but had to return home early as I felt so ill and tired.

Wednesday 14 September.
Around 9:30 I had diahorrea and lost all my energy. However, I didn’t lose consciousness and managed to crawl on my hands and knees and get my mobile phone. I rang the Doctor who sent an ambulance. Was taken to hospital again. Discharged around lunchtime after being checked over.

Thursday 15 September.
Attended the GP’s. She put me on the sick for 2 months. Oh no, and still no nearer knowing what was happening to me.

Tuesday 27 September.
Attended Sheffield Northern General Hospital for food allergy testing (dratted muesli). Yes, this is where my mention of my Coeliac disease is relevant. Results were fine - no food allergy. The Doctor here thought it might be Addison’s disease, but I was able to tell them that that had already been ruled out. Also had blood tests for tryptase (was told it is a form of anaphylactica) which were also ok. Still on sick leave. I was still very tired and found doing everyday things exhausting. I managed to do things but required lots of rest and warm drinks.

Tuesday 1 November.
Appointment with Cardio Respiratory Department where I was seen by the Syncope Sister. Until now I had no idea what syncope was let alone it could be something affecting me. From here a number of tests were arranged including a 24 hour urine test and a tilt table test. Urine test came back saying my salt levels were depleted and I should take more salt in my diet and ensure I drank at least 2½ litres of fluid a day.

Wednesday 30 November.
Tilt table test. What a day. Test was fine on tilting of the table, and standing for 20 minutes. The next part however, was a different matter. A substance was sprayed under my tongue and to begin with I was ok. I was asked to report anything I felt. First it was my hands feeling warm and then I began to feel sick. After that I remember nothing. I had collapsed and suffered the same symptoms as previously. This prompted a further appointment with the Cardio team.

Friday 2 December.
Appointment with Neurologist. All was fine at this appointment thank goodness. I was certainly being investigated but no nearer knowing what was wrong with me. Oh dear what can the matter be!

Thursday 5 January.
Appointment with Syncope Sister and Cardiologist. Tilt table test was discussed and from here it was decided that I would require a duel chamber pacemaker fitting. This was quite a shock as I really didn’t think it would be anything to do with my heart. The heart is obviously responsible for much more than we mere mortals think. I was asked to come into hospital in a weeks time for the surgery. Was I shocked or delighted or just overwhelmed? I’m not sure - after all what had happened in the past few months, it then happened so fast.

Thursday 12 January.
Admitted to hospital for pacemaker fitting. Kept in overnight and allowed home next morning. I felt fine. I returned to work on the 23 January with something which looks like nothing more than a scratch just under my collar bone. In time I am sure even this will not be noticeable, thanks to my wonderful surgeon. I am due my first pacemaker check-up on the 15 February and I am sure all will be ok. So take heart (pardon the pun) my fellow readers, there is a remedy it’s just getting the diagnosis.


Get in touch for more help and information

+44 (0) 1789 867 503info@stars.org.uk

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