I would like to share my story of POTS. This is the first time I have ever sat and written down my story so perhaps this is to help me as well as wanting to give advice to others who share similar conditions. My name is Natalie Carter; I am 22 and live in Liverpool with my partner. I have PoTS, Ehlers Danlos Type 3, Chronic daily headache, Chiari Malformation, syringomyelia, Scoliosis.
I had a very energetic childhood, I was a competitive swimmer and loved long distance running, this was always held back by the fact I always had something wrong with me and was frequently sick if there were something around to be caught I would catch it. I had ligament reconstruction in my right elbow, as they barely existed; its obvious now this is down to having Ehlers Danlos type 3. I had my tonsils taken out and a couple of weeks later all of the blood vessels burst in the back of my throat. I thought I was just unlucky.
I was very ambitious and still am, I got into Liverpool University to study architecture. My first year at university was pretty normal, I went out a lot, drank danced and managed to turn up to lectures the next morning. I completed all of my work and finished first year with a good mark. I started second year in 2008 and struggled, I no longer had the energy to go out and spent most of my time doing university work. My main problem at this time was back pain; I put this down to sitting at a drawing board. I was frequently ill and just kept getting turned away by my doctor telling me nothing was wrong. A friend of mine used to massage me to help with this, one day she noticed that my spine had started to curve over a couple of weeks this seemed to get worse, I looked at myself in the mirror and noticed that my ribs were not longer even. I went to see a doctor privately, thanks to my dads company, who diagnosed me with scoliosis and said he was worried about a syrinx (a cyst caused in the spinal cord when CSF fluid builds up due to a blockage.) on my spine and referred me to another consultant. An MRI was carried out, and he diagnosed me with Chiari Malformation, which is a structural defect in the cerebellum of the brain. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid. This was causing all of my symptoms and my curved spine; he explained that I needed an operation to stop things getting any worse. I was scheduled in for an operation a few months after this at the Walton centre. I was relived to finally have a diagnosis, but was finding everything really difficult at this time, I felt completely on my own. I was pushing myself really hard to study, some days I would go in to university sit down to work and cry because my headache was so bad I could not even focus on what I wanted to. I was finding it very hard to talk to people and express how I felt, I found myself stuttering. I spent more and more time in our student house not having the energy to leave. I had to give up, there was no way I could finish second year, this upset me more than the fact I was ill. I had fantastic support at this time, from my friends and also from my tutor who helped me come to terms with not being able to study.
The couple of weeks following this I became really bad, I kept collapsing and ending up in accident and emergency, my house mates were getting to know the place quite well. My headaches were excruciating, however I did have a couple of good days, until I fell down the stairs and was in agony with my head. I was taken in to the local hospital who didn’t believe I was in any pain and did not really do anything the two weeks I was in there, this was a horrendous experience I was back to everyone believing that I was making my symptoms up again, I couldn’t even walk to the toilet myself. I was treated very badly at this hospital, I am not going to even go in to it, I just hope no one else has the same experience that I did. My operation was brought forward so I was transferred to the Walton Neuro centre.
I was not ever scared about my operation; I just wanted to feel better. I had not coped well with general anesthetic in the past but this time was a lot worse. I must add at this point that I am one of the few people Morphine doesn’t work on, it doesn’t take away my pain at all just makes me very sick, other pain killers work to a very small degree. So I woke up being very sick and in a lot of pain. Instead of my headaches getting better over the next few weeks they seemed to get worse, I was discharged and ended up getting re admitted the next day. My head was so painful I was screaming, I had lost all dignity by this point. After they had ruled out anything serious a headache specialist took me off all painkillers and told me to stop consuming any caffeine. Since that day I haven’t had either of these things again. I was finally discharged. I got myself referred to a specialist in Manchester, which was a waste of time. I tried to start my studies again but had to stop before the end, I also could no longer cope living in a student house doing everything myself so I moved back home and saw a headache specialist in London. I had finally found someone who wanted to help me, which was a huge relief; he diagnosed me with chronic migraine. I tried lots of headache medications but was still really struggling as they did not seem to have any effect, I had absolutely no energy, had lost all of my ambitions and just wanted to lie in bed. I felt dizzy every time I stood up and collapsed occasionally. I was admitted to the National Institute for neurology for intravenous medication, which seemed to help whilst I was on it but not in the long run. Botox injections were tried; a week later I was again in excruciating pain again and was again admitted into hospital. I was put on medication, which didn’t seem to help. They then put a bolt in my head to monitor the pressure, from what I understand the results of this were within the normal ranges but fluctuated a lot. I was then seen by an EDS specialist who asked me lots of questions and diagnosed me with Ehlers Danlos Type 3, this made a lot of sense and explain injuries and things that had happened to me in the past. A couple of days later I was seen by Professor Mathias who wanted to do autonomic testing. The tilt table test was far from pleasant; they stopped because I nearly fainted. I was then diagnosed with POTS syndrome. It was scary being told I had all of these things wrong but now I knew why I had all of these symptoms. Which include, palpitations, pins and needles, joint pain, headaches, no energy, dizzy on standing, collapsing, bladder weakness, lack of concentration, amongst many others but just generally finding everyday life difficult, you get the idea.
It was explained that the headaches I was experiencing were made a lots worse by my POTS, so if we got this under control they might get better. They were right. After trying fludrocortisone, which didn’t really do anything I tried Midrodine. This was about 9 months ago. Finally I started to feel a little better; my headaches were finally improving. I still have a background headache most of the time but only have a very bad headache a couple of times a week. I am still very tired most of the time and struggle to do too much. I have good days and bad days, good weeks and bad weeks. I finished my second year to the end of April; I did all of the work at home and did not need to go into university. Over the last couple of months my POTS seems to have gotten a little bit worse, I went through a stage of collapsing over four times each day. I had another 24 hour blood pressure monitor a couple of weeks ago. I got the results yesterday, my blood pressure is a little bit higher but my heart rate is higher that when I was diagnosed, so my dose of Midodrine has been raised. I was upset yesterday at the thought of getting worse. I still suffer greatly, I go for days without leaving our apartment, luckily we have a nice view. My headaches have however got a tremendous amount better; I take each day as it comes. I try and stay as positive as I possibly can. I suffer from brain fog a lot but have regained my ambitions. I am starting third year in September and one day I will qualify as an Architect. The key coping for me is to stick to a daily routine consisting to taking my tablets, putting on my compression stockings and eating and drinking the right things, with this I will finish my studies. I cannot go out and party like I used to and it will be a lot more effort going into university, my close friends wont be there when I do but I am not going to let POTS ruin my ambitions, aspirations and desires. I could not have gone through any of this without my close friends, boyfriend and family.
I commend you if you are still reading my VERY long story believe me I have missed out a lot of things. For me Chiari, Ehlers Danlos, POTS and Chronic migraine are all linked; I hope that this may help others who have the same conditions. Feel free to ask me any questions n.a.carter [at] live.co.uk.