An honest look into how I have been handling dizziness

I had a dye contrast MRI today and while I was sitting in the tunnel with loud noises around me I found myself wondering what I would do if the MRI showed up something but more importantly how I would cope if it didn't. If the MRI showed a tumour or cyst on the brain I would be relieved and look into all the treatments, if it showed I had MS I would see it as just another hurdle I need to get over and find a treatment plan that works for me. But if it doesn't show anything I think I would break, I don't think I could pick up the pieces again and handle the disappointment of yet another dead end. This is the last medical test I can have and my last chance of getting answers for this dizziness before I need to look elsewhere, beyond my state and possibly my country. No I don't want the MRI to show that I am dying or that there's no hope for me, but I want it to show something anything that could explain why I have this consistent dizziness that keeps getting worse. I want to find a treatment that works, a treatment that gives me my life back and lets me plan ahead for the future. I've turned into the person who carries a box of paracetamol in their bag because the headaches and nausea happen when the dizziness increases and if I don't take something for it it gets too much to cope with. I've turned into the person who has a novel of medical tests and specialists they've seen but each leading no where. I've turned into the person who has accepted they will always be dizzy and this is my new normal which it shouldn't be. 

I have been journaling my dizziness for the first year (I stopped after a year as we took a break from doing anything and it seemed pointless) and it shows an honest look into how I have been handling it. Very few people know the real struggle I have had, I can count on one hand the people who really know how I am struggling apart from my family, GP and psych. As dizziness is so broad it can mean lots of things (low iron, inner ear disorders, concussion etc.) but it can also be hard to pin down what the cause is. I never intended to publish this but I feel it's time and maybe it's because I am over it all or I'm sick of everyone thinking that they're doctors and giving me advice that isn't helpful. Regardless I want people to understand what it's like to have dizziness 24/7 and how I have been handling it really. How some months I have been loosing it and other months have been fine but with tough patches. This is an honest look into how I have been handling this dizziness and one I hope you read and take on board. 

A Year of Dizziness

September 2019

You awake and the exhaustion covers your body like a weight, a minute of dizziness passes you and you brush it aside because you had a busy weekend which required sleeping on a cold gym floor on an air mattress that kept deflating. You get up and get dressed and go about your day, having a few more vertigo episodes as the day goes and you blame it on the full-on weekend you have had. The house is loud and noisy filled with five extra people for another few days and you struggle to recharge. Just when you think things can go back to normal you have to bake a cake for an 18^th and you push through the lingering fatigue all the while dealing with more frequent dizziness episodes.

 

October 2019

You bring up the fatigue and dizziness with your doctor, saying you think it’s to do with low iron as you’re also experiencing nose bleeds each time getting more intense. You get your iron checked and it’s confirmed that it’s low so you arrange to get iron infusion. In your mind you think that the infusion will fix things and you will soon feel normal.

 

November 2019

You pick up the iron infusion liquid from the pharmacy and get asked 500 questions and you have to confirm multiple times that you are getting it done by your doctor. You wonder if there is a black market for iron infusions and if so, who would require them. The doctor struggles to find a vein in your left arm before giving up and finding one in your right you wait an hour as the cold liquid drips into your veins and you hope you will see results soon.

You struggle with nausea; joint pain and the dizziness increases and after 48 hours you’re worried that something is wrong. Your doctor manages to fit you in an emergency appointment, and you’re told that these are lingering side effects, and they will soon pass. You go down to volunteer on Leavers despite the side effects and a friend offers to drive you down which you eagerly accept. You push through it all and survive the week, it’s been two weeks since the infusion and you still don’t feel any better. You go for a follow up blood test and wonder if your body isn’t absorbing the iron as the dizziness hasn’t shown any signs of leaving.

 

December 2019

You get the blood tests results and your body has absorbed the iron and there shouldn’t be any reason for you to still be dizzy and fatigued. You’re told it can take up to 6 weeks for it to fully work though so you decide to wait until January to further investigate. Some part of you wonders if a week down south will recharge you and all you needed was a holiday. You wonder if it’s all in your head and you bring it up with your psychologist and she tells you there’s no relation to your anxiety and you’re not burnt out. You feel relief but at the same time you still doubt yourself.

 

January 2020

The holiday didn’t help and the dizziness has increased to being more frequent and intense. You get sent for a glucose test, despite you and your doctor knowing that there’s a less than 1 percent chance you will be pre diabetic or diabetic. You spend two hours at a pathology place drinking the super sweet liquid that makes your teeth hurt and feeling like a pin cushion as they draw blood 3 times over the two hour period. You get those results back and they are normal, you feel relieved but at the same time it doesn’t provide any answers. You get sent for an Echocardiogram and try to ignore how awkward it is, then you have a Holter Monitor stuck to you for 24 hours and you try to go about your life with wires sticking on your chest and you hope it isn’t obvious.

 

February 2020

The heart tests come back normal which deep down you knew they would. You change how you workout at the gym as you have visions of yourself falling off the rowing machine. You get a referral to a specialist physio and you think you might finally get some answers. The physio shakes your head around and diagnoses you with Vestibular Migraines and you get a special diet to go on. Chocolate is out of bounds and you feel the world crumble around you. You wean yourself off chocolate over two weeks and learn to live with a new diet, it doesn’t seem to be helping.

You see your doctor and bring up what the specialist physio said but your doctor doesn’t think you have Vestibular Migraines as something doesn’t seem to be adding up and you agree. You stay on the diet anyway on the one percent chance it will help.

The dizziness is now consistent and you never how severe it will be each day.

You post in “Ask Docs” on Reddit wondering if some stranger can help you, but you get no helpful advice and feel like people aren’t taking you seriously.

 

March 2020

You survive church camp and pretend that your life is fine when you’re really struggling. You get sent for an MRI which comes back normal except for inflamed sinuses, so you take antibiotics and while your sinuses are now not inflamed you are still dizzy. You try another medication that leaves you feeling spaced out. You reduce your driving and you’re relieved that due to Covid things have shut down, so you don’t need an excuse not to attend events. You try another medication which you pay for out of pocket, your pharmacists now know your story when it comes to dizziness and they try to help. You have another blood test and everything comes back fine. Your memory is starting to go and unless things are written down you forget them.

You get sick of the questions multiple times a day asking whether you have had certain vitamin or mineral deficiency and asking if your positive that everything has been looked into. You feel like no one believes you and that you’re making this up for attention when you just want answers.

 

April 2020

After yet another medication hasn’t worked your doctor decides to refer you to an ENT. You ring up and get a voice message saying that due to Covid the office is closed and all referrals are being handled in a triage system. You pray that they deem your case to be severe enough to be pushed to the top of the pile. The cracks are starting to show and you wish the dizziness would stop, the tears now regularly fall but you find it therapeutic to let them out. You are well and truly over the questions you keep getting answered and wish you can hand everyone a document filled with the frequently asked questions.

You finally get through to the ENTs office and after a few days you get an appointment for the 22^nd of June over 6 weeks away, which is the next available appointment due to all the Covid delays. Your doctor tells you that this is actually a short time to wait as the ENT is so in demand.

 

May 2020

The month drags on and you start counting down the weeks until you see the ENT. Your psychologist tells you that you’re coping well and that for most other people they would be dealing with panic everyday as the dizziness would be too much for them to handle. You shut yourself off from the world because things are getting to much. Nausea starts and you feel like once again your body is against you. You see your doctor every other week for check ins.

You type up on a document all the medical tests you have had and the results and when the dizziness started and how it’s increased, it takes up two pages. You wonder if it would be weird to carry printouts of those to give to people who ask you questions about your health.

Bible study and then church start up again and you’re happy to see some people but also dreading it because you know the questions will start up again.

You set limits on where you can drive to and be super careful when you’re in the car as you don’t want to get into an accident.

 

June 2020

The month of the ENT appointment has arrived, and you start to count down the days like a kid excited for Christmas. You start to put your hopes on this ENT and pray that maybe he will have some answers. You get advised by your doctor and psychologist not to attend the church young adults retreat next month as it would be too much on your body. You wrestle with this decision and decide not to make it until after the ENT appointment.

Tension headaches have started happening and you now take Panadol everyday it seems.

You see the ENT you find the building ok and don’t get lost, you arrive 30 minutes early so you grab a Sprite at the café to help with the nausea and anxiety. You have hearing tests and ear pressure tests both of which come back fine. You eventually see the ENT and you tell him your long and complicated medical history not leaving out anything, he looks in your ears and says they seem fine. He has no idea what is wrong with you and refers you to have two balance tests and says he will call a Neurologist who has an interest in balance disorders and then refer you to him so he might be able to help. He says he will call you once he gets the results of the tests. You want to scream, but you just smile and nod and try not to feel to defeated.

You message friends telling them about the appointment, followed by your bible study group saying you won’t be attending the retreat you feel disappointment about it, but you know it’s the right decision.

Your doctor tells you that you need to trust the ENT as he knows what he’s doing, and he trusts in the tests you’ve been sent to have. As much as he doesn’t want you to see the neurologist as it’s what he has been avoiding he’s happy that ENT is going to talk to him first and believes that this should make the difference. He warns you that the neurologist doesn’t have the best bedside manner but you’re not there to make friends and you just want answers.

 

July 2020

You get your eyes retested just in case it could be optical, your eyesight hasn’t changed since you last got them tested just over a year ago. You order a new pair of glasses anyway because your insurance covers them.

You get a phone from the neurologist’s office saying they can fit you in next week and they’ve set aside this appointment for you as they were told it’s urgent. You wonder if that’s a good thing or not and you begin to fill out the stack of paperwork they email through.

You spend 1.5 hours having balance tests done and you end up with a spot left on your forehead from the sensors placed from the first test and knowing how it feels to have what feels like a hair dryer blown into your ears for minutes on end. You wonder what these tests will show and you’re sick of getting your hopes up.

The neurologist appointment comes, he tells you that ENT has referred you to him as he thinks it’s nothing related to the ears despite not getting the balance test results yet. It’s like the physio all over again, he shakes your head and checks your eyes and ears, you wonder what he is looking for and you honestly wonder if he will find anything wrong with you. He is abrupt, and you feel like you aren’t being heard when he diagnoses you with Vestibular Migraines again. He says due to your complex medical history there’s only two medications you can try and if they don’t work then your dizziness is anxiety related. You tell him there’s no way it’s anxiety related and he says that there’s a 50% chance it could be and you resist the urge to shake some sense into him. You get told that your blood pressure is on the lower end of normal and due to this the medication has risks and you will need to get your blood pressure checked by your GP in 2 weeks time. You leave feeling defeated and annoyed and angry and with a follow up appointment 2 days after your 26^th Birthday. You get the script filled and your pharmacist warns you it may cause dizziness and to be careful. You go home and the tears start to fall, you want to scream.

You’re thankful that you have a doctor’s appointment that afternoon and as soon as you walk into his office the tears start to fall, despite telling yourself they wouldn’t. Your doctor is super understanding and isn’t happy with how things happened at the neurologist and tells you he has had issues with the neurologist before. He tells you it’s worth attempting the medication and that you will see him 2 weeks as on schedule and hopefully he will have the ENT and neurologist reports by then.

You start taking the medication and your brain starts to feel fuzzy and you’re unsure if it’s the dizziness reaching a new level or just the medication.

You get a phone call from the neurologist who is concerned that the pills will affect your asthma and you find yourself googling the name of medication and finding out that there’s a less than 1% chance of the pills affecting it. You promise the neurologist that you will call him if the pills do and resist the urge to hang up on him.

A few days later the pills do affect your asthma so you ring up the neurologist’s office and you get emailed another script to get filled out. You go to the pharmacy with the printed out script and they fill it out and you promise you will bring in the hard copy of the script once you get it. You get warned about the side affects and leave with 4 pages printed out about the medication as the neurologist has told you nothing. You ring up your doctor’s surgery and leave a message for your doctor keeping him in the loop as he deserves to know that the medication has changed, he rings back within an hour an apologises for not picking that the initial meds could’ve reacted with the asthma preventer. You start the medication and your head feels fuzzy and you just feel out of it. You push through the first day and complete a job application and go out for ice cream with a friend as you need a distraction. The weird dreams start and your quality of sleep drops.

You see your doctor after two weeks on it and it makes no difference you’re still annoyed at the neurologist, but you find yourself holding out hope that the medication will work.  You agree to give the medication a while longer to work.

 

August 2020

You find yourself wanting the medication to work and subconsciously willing it work but the dizziness is always there. You see your doctor after two weeks and your over the medication, it’s not working anything carbonated tastes “spicy” to you and you’re having weird dreams so your quality of sleep isn’t great. You get told to go off the medication and to cancel the neurologist appointment and you feel a sense of relief. But you also feel defeated as it means there’s nothing else you can do, you let the tears fall for a moment but you need a break from focusing on it. Your doctor mentions something about maybe having had a small stroke that wouldn’t have showed up on MRIs and scans but you’re unsure though at this point in time you will believe in anything. You feel like you’re still missing something but at the same time you just need a break from thinking about potential medications and specialist appointments. You agree to see your doctor every two weeks until a solution is found because deep down you’re unsure how you will cope otherwise and you’re wondering if it will get worse. You realise that next month it will mark a year since it all began and it makes you anxious because you thought by now it would be over but it’s not. You’re sick of talking about it to people and you just want to scream.

You go see you psychologist and she looks you in the eyes and asks you what is wrong. The tears start to fall and they won’t stop, you’re over it and you just want to escape your own body if only for an hour. She says that you’re experiencing depressive episodes and it’s normal and expected and she honestly expected it sooner which is credit to how resilient you are. She asks you questions like if you have appetite, if you’re sleeping ok and how you’re really feeling and if you’ve thought about suicide. You answer honestly and you realise that what you thought were medication side affects were actually depression symptoms. She mentions a contingency plan if you decide you want to end it all, which you can’t fathom but you understand where she is coming from. She tells you multiple times that she will have to report this to your doctor and you’re relieved that she has to. You leave the appointment feeling lighter but knowing that now that the tears have started flowing they won’t stop. You stare at the webpage she has sent you with homework on it because it’s real and you’re unsure where to begin. You accept that you’re in the middle of a depressive episode and that makes things easier.

Life goes on, you give speeches for ReachOut about your mental health and attend a job interview. You try not to mention your ongoing health issues during the job interview, but you let it slip that you see your doctor every other week and you’re paranoid that it affect how they see you.

 You feel a bit more spontaneous which is not like you, it’s like you’re trying to feel something or do something that will jolt you awake from this depression. You go to the gym and no matter how much you work out you don’t get a serotonin high and you leave each session feeling exhausted and flat. You book tickets to see Hamilton next July and you pray that by then maybe this dizziness won’t be an issue but you have no idea. You feel a bit of joy and excited about the trip and you want to bottle it up to rely on during the tough times. The anxiety decides to peak randomly and you spend a Wednesday obsessing about the recent job interview you had and no matter how much you bake or work out it won’t leave you. You wonder if it’s even practical for you to start a job at the moment but you can’t live your life in fear or restrict yourself even further.

You see your doctor and he says that you’re allowed to feel helpless especially considering that you don’t have a diagnosis and that maybe something will eventually come up but you just don’t know. You wish you could wear a badge or something that says ‘don’t ask about my dizziness’ because you’re sick talking about it and hearing everyone acting like they know what’s wrong with you when they don’t.

You start to wonder how you will cope when September 24^th rolls around as that’s the day the dizziness started and you never thought you would still be dealing with it.

 

September 2020

You want to ignore your upcoming birthday and for the first time in forever you’re not excited about it. You find yourself wanting to hide away from the world and you make excuses to avoid social situations because you don’t have the energy.

You find yourself tossing and turning with sleep and you get woken up at 5.30am most mornings with dizziness. You find yourself loosing energy and you have to carefully plan your days so you make the most out of the limited you have.

You have a couple of days when the dizziness is really mild and you rack your brain to figure out what you did differently those days but you come up empty.

At bible study when they ask what they can pray for you, you say you need a new body and they write down you want to be a robot. You laugh but at the same time you’re wondering if that’s possible because you just want to escape from your body.

You start recording everything down in a journal at the end of each day– how many hours of sleep you had that night, your diet, what activities you did and a dizziness rating out of 5 (5 being the worst) hoping that maybe your notes will unlock something.

You celebrate turning 26 and try to ignore the dizziness, because never in a million years did you think you would be dizzy on your birthday.

You have some rough days of dizziness and notice that the bulk of the days have risen from 3 out of 5 to 3.5 out of 5.

You get your hopes up regarding the job you interviewed for and you ignore the doubts that you couldn’t work 4 days a week along with being dizzy. Your references get contacted but it comes down to you and another person and it’s not meant to be.

You wake up one day and you realise it’s been a year of dizziness. You see your doctor and you can’t help but feel defeated because you’re still no closer to getting any answers. You get another blood test and the process starts over. A year of dizziness, a year of unknowns and a year of being no closer to a diagnosis.