Hi my name is Julia
I’m new to these boards but have been lurking for a while looking at all the fantastic stories and resources. My story began in March the day after my birthday. I currently work as a nurse and after working an extra large amount of night shifts over the winter period I decided I would have some time off and booked 3 weeks.
Unfortunately this was the time migraine decided to attack in full force (think it was probably sleep deprivation that caused it plus mega caffeine usage). Originally I thought I had trapped a muscle in my side as I had pressure in my stomach/rib area continually. After about ten days I decided to go and see the G/P about this but never got there. I suffered an SVT in the afternoon (fast heart rhythm) at home and fainted which resulted in my going to A/E. My heart rhythm returned to normal after but I noticed that I had pressure in my nose with a headache and dmissed it as part of the SVT. Over the following weeks I kept getting a feeling of being very drunk/confused mixed with sudden onset of vertigo where I became completely disorientated as to where I was in relation to the room which lasted less than 5 minutes. This was always followed by a headache/pressure of either being like a tight hat or in one half of my head swapping to the other sometimes. Throughout the whole time I suffered with continual gastric problems/stomach twitching. I attended A/E again as we thought it had something to do with my heart and I was waiting for a cardiology apt. I was chest x-rayed and sent home with diagnosis of a trapped muscle??? :lol:
My headaches became more and more frequent and severe over the following weeks and the straw that broke the camels back came when I suffered migraine with senory disturbance to both legs and left arm, visual disturbance and felt very faint everytime I sat up. I thought I was having a stroke! My head felt as though something was about to explode inside and the migraine affected my whole head. I was taken back to A/E again by ambulance this time and they kept me in overnight and did a CT and an MRI. I was very dizzy and felt as though I was rolling off the trolley all the time even though I wasn’t. I felt as though I wouldn’t be able to walk about as I was so dizzy and although a little unsteady I could walk. I wanted to vomit and was injected with stematil (bad for migraines) to stop me being sick. As they couldn’t find anything on my MRI/CT they discharged me the next day and said I would be followed up by Neuro and suggested that I might be anxious causing my symtpoms. I was still continually dizzy and unsteady on my feet. When I got home I suffered severe back pain with sensory disturbance and still continueed to have hadaches. I went back to A/E again and was given entonox which made me feel weird! I was discharged and told I would get an urgent neuro referral.
Over the following weeks I suffered daily headaches with the occassional more unsual symptoms once or twice I woke in the night with flashing zig zags (aura) and when I tried to get out of bed and walk I fainted followed by vomiting. Another time everything became so loud and the room expanded that I felt like I wanted to vomit (Alice in Wonderland). I had continual dizziness all the time at this point which I would describe as a rocking sensation, bobbing sensation when stood still (like being on a fast pogo stick all the time) and floor moving dizziness when I took a step it felt like the floor would slant down. Even when I sat on the toilet I felt like I was setting sail! I had been given no explanation for my symptoms. My G/P sent me for a gastroscopy as I had lost weight and had continual gastric twitching for over 2 months, It made it difficult to sleep lying flat due to having reflux. I was put on omeprazole and buscopan with no effect. I then had a gastrocopy where they diagnosed gastric spasm which again they put down to possible anxiety till I told them I had it for 2 months all the time. I was put on Mebeverine and domperidone which made a difference in 4 days and I could lie falt and eat well!
I finally got my neuro appointment which was very disappointing. I went with my boyfriend and dad safety in numbers! I was dismissed and told nothing pathological could be found and that I would be sent to ENT :evil: .
The nurse followed me out of the clinic as she knew I had not been given an answer. She told me that I needed to go and see Dr. Silver but did not say why. She repeated this again and when I asked her what did he do she did not answer me but merely repeated hereself. This set me on the right path! I put a complaint in about the first neuro and asked for a second opinion didn’t get Silver but got someone just as good. I got a second opinion from another neurologist who was fab and was diagnosed with chronic migraine. I was started on propranolol and after about a month all my diziness had gone although still suffering with daily headaches with occassional bad ones. I was dizzy for almost 4 months everyday but I am never dizzy now. It’s amazing how little most doctors know about this condition and even myself as a nurse I knew nothing about migraine and MAV despite the fact my mum and aunt both suffer from it. Reading peoples work like Dr. Silver, Dr, Bernstein and even Dr. Goadsby has been great and the penny finally dropped as to what was wrong with me!! Getting a diagnosis is the first step on the pathway to cure.