Doctors: Part 1.

We think that doctors are meant to hold all the answers, that when we get sick they will be able to fix us. Well that’s what I thought before I got sick. They study for years to become doctors, they specialise to become experts in their field and we put our trust in them to be able to fix us or at least help us, because isn’t that what they are meant to do, isn’t that their job?! 

It didn’t take me long to lose all hope and trust in that doctors could fix me or even just help me. Ten days after the onset of my never ending headache I developed numbness tingling and pain in my hands and then my feet, it was only then when I and my parents decided it was time to see a doctor. The doctor I saw was a general practitioner she had no clue what was wrong with me other than to say that I needed to go to the hospital for an MRI scan. So that’s what I did and the next day I saw a neurologist for my results, the neurologist thought I had a tumor on my pituitary gland so admitted me for further investigation and another MRI, this time with contrast. The tumor was ruled out but I still had my headache and weird things with my hands and feet. At this point I placed all my trust in this neurologist and the doctors at the hospital that they would figure out what was wrong with me and fix me. I didn’t question the tests they ordered or the meds they gave me, I was only 15 and I had every faith that they knew what they were doing and I would be fine again soon. After 5 days in hospital and no closer to knowing what was wrong with me as every test came back normal I was discharged and thus begun me losing my faith in doctors. After the weekend I went back for a follow up appointment at the hospital with the neurologist and he basically blew me off, telling me I had a migraine, to take this topamax as it would be my miracle drug and my headache would go and to basically go away. Topamax was never my miracle drug, I’ve tried it twice now, both times it did nothing and that doctor was wrong, I don’t have a migraine. 
I then found a new neurologist, hoping he would be better than the last but he was useless too. He gave me medications to try but none of them worked and after trying each one for a period of time I went back to him to tell him they didn’t work and his basic attitude was ‘What do you expect me to do about it?’ My response to that was confusion, wasn’t he supposed to be a doctor a neurologist at that so surely he was meant to help me so I wasn’t in so much pain. He offered me no suggestions as to what was wrong with me and pretty much was disinterested in helping the girl with a constant headache. Fed up with how I was being treated by him I stopped seeing him and for a period of time I stopped seeing doctors, no one seemed to want to help, I felt helpless and not to mention I was in a lot of pain all of the time. 
That summer I went back to England to see a neurologist there, hoping that this doctor was going to be better than the experience I had already had with the ones in Dubai, it wasn’t. The woman was meant to be a top neurologist however she told me at my appointment that there was nothing wrong with me and I needed to have a restful summer and it would go away, which infuriated me. Safe to say I had a somewhat ‘restful’ summer and by the end of it I was still in pain and that neurologist was definitely an idiot.
I then tried alternative therapies, Osteopathy, cranial osteopathy, rekei and my school counsellor took me to go get acupuncture done as to begin with it seemed very scary then thought of having loads of needles in you. Needless to say there was no need to be scared because it doesn’t hurt at all and is actually very relaxing, I quite like it now. But none of the alternative therapies worked and I was left feeling more helpless. The practice the acupuncturist worked at also had doctors and physical therapists etc at. So the acupuncturist after agreeing that this wasn’t working and if it was going to help it would already have started helping after 10 sessions he gave my case to a GP at the surgery, she reviewed my case and was interested in trying to help me so we set up an appointment. I was shocked she was really nice and it seemed like she genuinely wanted to help me. Though she wasn’t quite sure how she was going to help me. She noticed that I had very low blood pressure and a very high resting heart rate, which is when I told her about the blackouts I had been experiencing since I was 12. She decided to send me to a cardiologist at the American hospital in Dubai as it was the only place in Dubai that had the test she thought I needed, a tilt table. I didn’t like him from the moment I met him and he went on further to annoy me by saying I should take some paracetamol for my headache, which infuriated me. Did he think I hadn’t already tried that months ago, did he think I was completely stupid, I wanted to punch him in the face I was so angry, but I contained myself and didn’t. He ordered tests, an EKG, ECG, and a 24 hour heart rate monitor and then eventually a tilt table test. The tests came back in that I had slight mitral valve prolapse but with no regurgitation, tachycardia and I tested positive on the tilt table test for neurocardiogenic syncope. And I was started on a steroid called Fludrocortisone, the aim of which was to stop me passing out all the time, I’m still on it but in the beginning it didn’t work, it only helps now that it’s combined with the other medications I am on.
At this point despite the annoying cardiologist who I thought was an idiot, I was pleased they had finally found something wrong with me, however I was confused as to how on earth any of this was going to help the pain inside my head, which was without a doubt my biggest problem. I could deal with the blackouts, I’d already been dealing with them for 3 years it was the pain I couldn’t deal with and I felt that was somewhat being forgotten about. However the cardiologist at the American hospital treated me like dirt so eventually I stopped seeing him but continued to take the medication and seeing my new GP, who I actually really liked.
But then my black outs got worse, I would black out over 10 times a day and on multiple occasions I would shake and jerk to the floor like I was having a seizure however it wasn’t epileptic. And my resting heart rate was always through the roof, I couldn’t play sports anymore, I got tired too quickly, as soon as I was to start doing something active my heart rate would sky rocket even more and I would have to stop. So I was sent to the German heart centre in Dubai, I was told there that I needed to stop physical activity like sports because my heart was working overtime and continuing to do so was causing it damage. That was hard to hear because I loved playing sports and didn’t want to stop, but I took the doctors advice and stopped for a bit. He repeated all the tests the previous cardiologist did, but added a 24 hour blood pressure monitor as well as a 24 hour heart rate monitor. I remember having to go to school with it on the next day and having to repeatedly explain what it was to people. The German cardio guy put me on a beta blocker to lower my heart rate and see if that would help, though I had no diagnosis as to what was wrong with me and everyone seemed to have forgotten about the fact that I had a headache all the time. Meanwhile my GP had been doing research and was convinced I had POTS, Postural Orthostatic Tachycardia Syndrome, but knew that no one in Dubai would have the expertise to diagnose me with that or even know what it was, so she suggested I try my luck with going back to England to search for answers. The majority of the doctors I had seen in Dubai seemed to be useless and I felt very helpless that none of them seemed to be able to figure out what was wrong with me, and I was annoyed that everyone seemed to be forgetting my biggest problem; the pain.
This was Spring 2011 and I was very depressed, I had zero friends because they had all ditched me that year, fed up with the girl who was always in pain and was depressed because of it. That year I left school 2 months early to go back to England and no one even noticed I was gone, or if they did they didn’t care enough to get in contact and enquire about where I was or how I was.

To be continued…


2 thoughts on “Doctors: Part 1.

  1. Sian you are so wonderfully strong. You have taken control and not let your pain define your life. I tell that to my daughter who developed NDPH age 15 last November. Coming up to 16 she has not had to experience your frustrations as your blog has helped me come to understand that she will live a normal life if she takes control and does not let the pain define her life. Please know that you have helped me and through that my daughter follow a path of empowering options to live with her pain. Without your sharing it may have taken years to realise that the medical profession do not have all the answers. I am a specialist renal nurse so perhaps I knew that already without acknowledging. Stay strong. I hope your course goes well. Thank you. I may not have met you but I know you are a wonderful young woman.

    • Thank you for such a lovely comment, it really means a lot to me when people get in touch to say I have helped them even in a small way. I hope your daughter can too take control of her life and try to live a happy and full life despite the pain. Thank you so much!

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