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My Story

It’s quite difficult to explain everything so I have tried my best to summarise my story, and write it ‘how I felt at the time’.

After Education, I set up my own business as a self-employed photographer back in 2007 and have been working as an outdoor photographer since. I would easily carry my kit (about 7-9kg) for miles a day whilst summiting high ground with an overall ascent of thousands of feet per day. Even an average day in the office would generally end with a minimum of a 2 mile walk in my local countryside. Everything about my life could be summed up with one word “outdoors”. Landscape shoots would start at dawn (3am in the summer) and end at dusk (11pm in the summer) both of which are testing to the healthiest of people and those of you that have POTS or know of someone suffering with it, will easily understand that my life as mentioned above was about to change. Drastically!

It all started some years ago, I had many days were I felt strangely unwell and started to become very tired – despite having early nights. I didn’t think much of it at the time and continued on as normal.

After a photographic trip hiking in the peak district a couple of years ago during the winter, I discovered I’d lost a fair bit of weight. I thought this was due to the cold weather and exertion I had put my body through so didn’t really think much of it at the time. The tiredness really set in during the months that followed and with it came the upset digestive system and I began to struggle with a pretty constant nausea. Things started to become difficult with slight dizziness and my camera kit was a struggle to carry especially with my heart pounding on exertion, but me being me, yet again, carried on as normal.

June 2010 was my last solo trip away; camping and photographing in lake district. I fell very ill during those few days and at the time put it down to a 48hr bug. When I returned home I realised that I had lost more weight so decided to try a high calorie diet of 5 meals a day. After two weeks of this I managed to lose a further 2 pounds as well as feeling incredibly ill with stomach cramps and indigestion. This is when I knew that something wasn’t right.

It may seem obvious reading the above now, and it is to me – with hindsight, but you have to consider that the deterioration was so gradual, that at the time, I hardly noticed the difference in myself.

Doctors then became involved and we began following various avenues. The first of which was my heart.
I had multiple tests over the following months (constantly fighting with them to ‘prove’ that I wasn’t well) but the results always came back satisfactory, which was incredibly frustrating as I only had to stand up to go Tachycardic!? I had bloods taken to the point that they should probably give me some back, but again and again nothing abnormal ever showed up.

The doctors were scratching their heads and even sent me to hospital on different occasions in the hope that they would be able to take things further, but they too scratched their heads and discharged me. I felt like I was in the wrong, and even began doubting myself, was I subconsciously causing this through stress? Yet I knew I wasn’t stressed or depressed for that matter! I was just worn out that I had to consistently fight to prove that something was wrong and that was making me stressed!

The deterioration that was once hard to notice soon become very apparent on a weekly scale. Fortunately my weight settled (I’m 6ft and only weigh 8:6!). Eventually it got to the point that I could hardly walk and simple tasks like brushing my teeth would bring me close to passing out, life as I knew it was gone. My camera bag sat collecting dust in the corner of the room, and I felt trapped in a body that wasn’t mine. It wasn’t so much that it was hard and painful to do things, the fact was that for all the will in the world my body couldn’t do things. I would just plod along breathless, without the energy to move any faster, it’s hard to describe, but if you imagine a healthy person running flat out, as fast as they possibly can and then trying to run faster, for me trying to reach walking pace was as impossible as that.

At this point I pestered the Doctors on a daily basis and soon I was under 3 different consultants at the hospital, another rendition of tests from MRI scan to camera inserted into dark places, injections in the muscles to yet more bloods taken. Lyme Disease? Thyroid? Gluten-free? You name it we tested and tried it.

In between the months waiting for tests, I badgered the consultant’s secretaries, constantly pushing to bring the appointments forward and chasing the results of tests (it was just one big battle, trying to bring my medical notes to the top of the pile) – all the time stressing that although results kept coming back “satisfactory”, there was something very serious going on!

This was when I saw a General Medical Consultant by the name of Dr Sarda. I think he had POTS in the back of his mind, but just to be safe sent me for some other tests and x-rays to rule anything else out. A month or so later, on my third visit with him, he got a nurse to check my pulse whilst standing and laying. I laid still on a bed, not talking or moving for 3 minutes, at which point the nurse took my pulse (118bpm), she then asked me to stand up, I slowly dropped my legs off the bed and stood up, “you look dizzy” she said placing one hand on my shoulder to steady me.

It was at this point that my battle to prove myself was over. As soon as I stood upright the machine started flashing and bleeping all sorts of colours. “That’s not right. That can’t be right…” she checked that the thing was still attached to my finger and then looked at me and said “I think we’ve found that there is most definitely something wrong”. Within 3 seconds of me standing up my pulse had shot from 118bpm to 253bpm and it stayed like that for nearly 2 minutes!

Dr Sarda soon wrote a letter referring me to London to see a Prof. C. Mathias to test for POTS. In the meantime I have been taking a prescription of beta-blockers to control my heart rate. I started this blog in March and my appointment for London is on the 19th April. I hope to find answers there and begin some form of treatment. I just pray that I can get some of my old life back.

I shall be discussing my thoughts and feelings within the pages of the blog, but if you have any questions then please do contact me (email address on my website – www.liamgrantphotography.com). My symptoms are listed on a page above and there is also info from a great website describing POTS in more detail.

6 Comments
  1. Liam, I really really would like to get in touch with you. I share some problems – EDS, POTS, also Crohns and colitis and Addisons disease, currently in hospital at St Marks in Harrow, have been for 3 weeks and not really getting anywhere.

    Ive had an initial consult with prof mathas privately and he is trying o get me referred back and admitted on nhs for testing ASAP to work out a plan, right now i couldnt even be transferred there as im too ill with the gut stuff and many hernias yet they dont seem to be on top of it here and wont transfer me to Mathias or somebody who understands the autonomic failure even though thats a huge issue for me. Your story is so similar to mine in many ways though you are several steps ahead of me and your story gives me some hope but I would so like to get in touch to get some ideas, info, share experiences and generally chat if that is something you would consider.

    My contacts are saltimbanc0@hotmail.com, or on Facebook – Simon Waller (there is also a blog/info update page on FB and i post on several boards for POTS , EDS etc). Also happy to send a phone number if useful.

    Hope things are going well for you at the moment or at least in the right direction.

    Regards

    Simon Waller, 24 (S.E England)

    • Hi Simon, I have sent you an email to your hotmail address, please check your Spam folder as I don’t think my last email got through. Please let me know if you haven’t received it.

      All the best,
      Liam

  2. I completely relate to your story, Liam. Fingers crossed for you. I’m under Prof Mathias too, and have recently had autonomic testing in London. I see Prof Aziz as well. Progress has been made, and I think these two really know what they’re talking about. Great blog, I enjoyed reading it =]

    • Thanks Hannah, yes both Prof’s really are good at their fields, hope they can help you as much as they have done for me. Will head over an take a look at your blog later in the week when I have a bit more time. All the best, Liam.

      • Lisa permalink

        Liam,
        While waiting for a thunderstorm to pass, I was reading on the internet and discovered your blog. I have to say that its really great to read about someone else in the same situation. It is terrible to feel at your worst and then doubt yourself because your MDs findings don’t make sense to them and you are far sicker than the lab reports let on. I feel like I could be a millionaire if I had a dollar for the number of times I said “I am not depressed!” and it fell on deaf ears. As weird as it seems the EDS, POTS, Hashimoto’s, etc diagnoses I’ve received give me piece of mind even though they sound bad/are bad and help me to know I’m not depressed not even deep, deep, down. Thanks for your blog!! 🙂

      • Thanks Lisa 🙂
        I know exactly what you mean, I think we go so long looking for an answer that when we finally get one and everything we’ve been suffering with falls into place, it is such a welcome relief. Understanding what is going on certainly has helped me both come to terms with these conditions as well as learn live with them.
        It’s raining heavy here today, sadly no thunder though (I do like a good thunder storm!).

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