Hi, I'm an invisible disability blogger over at https://unwantedlife.me that has to live with some pretty debilitating physical and mental health problems. My current diagnosed invisible health conditions are Inappropriate Sinus Tachycardia, Persistent Postural-Perceptual Dizziness (PPPD), and Reactive Hypoglycaemia, but I'm also being investigated for Postural Tachycardia Syndrome (PoTS).
Last October I started getting bouts of vertigo that I'd never had before, even though I have PPPD. It started without warning and caused my entire body, including my vision, to feel like I was being flipped 180°, and this was happening every few minutes for every waking moment for close to three weeks. It was extremely debilitating. Since then, I've had a further episode of this vertigo and another episode of dizziness that was similar, which I've only just recovered from.
The latest episode gave me extreme feelings and sensation of dizziness and balance issues, but without my vision also flipping 180°, but it galvanised me to want to try and get to the bottom of why this is happening to me.
I have an appointment with my autonomics specialist at the end of July, who I unfortunately only get to see once a year even though they're still investigating me for PoTS. My conditions have a lot of overlapping symptoms so it's hard to pinpoint which condition might be the cause of my recent episodes with my extreme dizziness and vertigo.
Thus, want to compile as much data as possible for my upcoming appointment in the hopes I can get some answers in July, rather than having to wait for another year. I've been going through this diagnosis process with this specialist for about six years now, although my issues first presented in 2006.
As such, I got my blood glucose monitor replaced as it had stopped working for some time ago now and tracked my blood glucose for the last week of the most recent episode. This means I can track my blood glucose and make that data available to my specialist when I see them. However, one of the likely causes of these episodes could be due to low blood flow to my brain and thus low oxygen levels in my brain, which PoTS could cause. Therefore I want to get a blood pressure device so I can track that data for my appointment as well.
However, I don't have the money to buy one even though they're not very expensive, due to being forced to live on disability benefits. I'm hoping to get either the Beurer BM58 Medical Blood Pressure Monitor or the Braun ExactFit 3 Arm Blood Pressure Monitor BUA6150 which I could get for around £45 not including delivery.
If the original target is met particularly quickly, then I may raise the target amount.
If I raise the target amount then the additional money raised will be spent on a cheap exercise bike (approximately £150) so I can reproduce an exercise stress test at home, much like in my cardiac valve stress echo test (https://unwantedlife.me/pots-cardiac-valve-stress-echo) I had earlier this year in order to create more relevant data from my appointment in July. The reason I would do that is that my conditions have left me with an extremely low exercise tolerance whereby I can lose control of all my muscles and be unable to move for 45 minutes whenever I try to exercise, and no one can tell me what's causing it so I don't know how to adapt.
Thus, having an exercise bike and a blood pressure monitor where I could repeatedly try this in a safe environment should help me get the data I need for my specialist to finally give me some answers on this issue. Plus, at the same time, it should also help explain my dizziness and vertigo episodes.
After that, any other money will go on a box of HIGH5 Zero electrolytes tablets because they can help raise my blood pressure, without affecting my blood sugar, with the rest being donated to the Snowdon Trust who supported me with my tuition fees for my MSc. Having the opportunity to give something back to them would be fantastic as I wouldn't have been able to finish my MSc without their support.
However, my main concern is getting my blood pressure monitor, hence setting the amount to that specific target to start with.
As a thank you for donating, if you agree, I'd also feature you in an article I'll write about using the blood pressure monitor and if that data helped with my diagnosis, you could also feature on my sponsors' page (https://unwantedlife.me/sponsors), or you can feature on my sponsors' page instead of in the article. you can also opt-out of either of course too
- Michael Brooks
- Taryn Allie
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