A year of dizziness

Happy 1 year of dizziness to me! 

I "celebrated" by seeing my doctor and having a blood test (the clinic at my doctors is hands down the best clinic ever they always manage to find a vein despite me having the worst veins) and then doing a bit of retail therapy. I told my doctor I couldn't believe it had been a year of dizziness and he responded that he could as we're still no closer as to what it could be.

I remember waking up on the 24th of September 2019 feeling exhausted and a wave of dizziness coming over me and thinking nothing of it as I thought it was part of what I call an "anxiety hangover" which is what I experience after any event where my anxiety is heightened. Then throughout the day I experienced a few more bouts of dizziness and as the week went on so did the dizziness. I had been experiencing monthly nosebleeds and feeling fatigued so I had a feeling that I had low iron and it was confirmed when I saw my doctor and had a blood test. I honestly thought an iron infusion would sort it out but along with dealing some not so fun side affects from the infusion the dizziness continued to increase. It crossed my mind that maybe my body wasn't processing the iron but the follow up blood test I had six weeks after the infusion said that my iron levels were great. 

By this stage it was mid December and I decided to wait until January to do further testing as I already a doctor's appointment booked then. The dizziness was a lot more frequent and increasing in severity by this stage. I had a glucose test followed by heart tests all of which came back fine and I then saw a specialist physio in February who diagnosed me with Vestibular migraines and put me on a diet which did nothing (but it did stop my dependence on chocolate). The dizziness was now consistent along with periods of more intense dizziness. I then had an MRI which came back fine. My doctor tried me on a variety of medications to see if anything would before I got referred to an ENT which thanks to Covid had a six week waiting period. The ENT sent me for two balance tests which came back normal and then referred me to a neurologist who specialised in dizziness and if he couldn't help me then I was a medical mystery. The neurologist said I either had Vestibular migraines or it was my anxiety which made me so mad as having done my research I only matched 50% of the Vestibular migraine symptoms and both my psychologist and doctor had crossed off my anxiety causing the dizziness (I was thankful to have a doctors appointment booked that afternoon and as soon as I saw my doctor I burst into tears because it had been such a bad appointment). But I took the medication the neurologist prescribed to me but after a few days he had to prescribe another medication as the first one reacted to my asthma preventer and was affecting my breathing. After four weeks on the medication which drove me crazy my doctor advised me to stop it and cancel the follow up neurologist appointment (I think he was afraid I would slap the neurologist...). By this point my mental health wasn't great due everything which was to be expected so it was decided we would take a break for an indefinite period of time and just see how things how play out because it had been just under 11 months since it started and trying to get to the bottom of it. 

The dizziness has restricted me in a lot of ways, I'm not allowed to drive more than 30 minutes and while I have on occasion driven for 40 minutes I have paid for it. I've limited with what I do at the gym and have cut it down to twice a week instead of three times. I have to be careful with what I do and my activity levels as my stamina has reduced and I find if I don't get a decent nights sleep I don't function. 

There are days when the dizziness isn't too bad but they're few and far between (maybe one day every 2 weeks) and it's easy to forget that I have it but then I get a big wave of dizziness. I never thought that I would be experiencing it a year later or that the cause of it would still be unknown, I honestly thought it was due to low iron. 

For those curious the following have been ruled out:

• Low iron 
• General vitamin/mineral levels that show up in blood tests (low vitamin D etc)
• Kidney issues (that show up on a detailed blood test) 
• Diabetes (including pre-diabetes)
• Stiff heart valve/other heart problem
• Anything that could show up on a MRI (tumour etc.)
• Vestibular migraines (this has been ruled out twice!)
• Inner ear issues including balance problems 
• Anxiety/mental health (but my mental health has been impacted by the dizziness, which is understandable)
• Meniere's disease 
• Sinus inflammation 

And I have tried the following treatments:

• Iron infusion (it increased my iron but didn't stop the dizziness)
• Vestibular Migraine Diet 
• So many medications that I won't list here but including anti epileptic medications, antibiotics, ibuprofen and medications targeted for Meniere's disease. 

While I have had to advocate for myself with specialists, I'm so thankful that my doctor believed me from the get go and took it seriously. He has told me repeatedly that we will get to the bottom of this and while it's not likely, it's great that he's not giving up. So what am I currently doing about my dizziness a year on? Well I've spent the past two weeks keeping an extremely detailed diary covering everything from what I eat to how many hours I sleep, the activities I do during the day and giving the dizziness a rating out of 5 (5 being bad). My doctor wants me to continue to do it for the near future and I'm hoping that it may give my doctor a clue as to why I have good and bad days with dizziness. It takes me 5 minutes a day to fill it out but I'm willing to do anything and maybe it can give us a new direction to look into. 

I am hopeful that next year I will not be "celebrating" two years of dizziness but who knows? For now I am praying that we find some sort of treatment to at least reduce the dizziness and make it more liveable.