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Hi there,
My name is Rachael, I'm 30 and I live in NZ. I'm a professional and a mum.
I have Ehlers-Danlos - hypermobility type but with vascular features. With this comes the fun of Chronic Fatigue Syndrome and POTS.
I've had neurological deficits in coordination and sensation in my left side for over a year now. It seems to go down the left side of my head/face and ends at the elbow of arm. I was referred to a neurologist by my excellent GP. He did a rudimentary exam, and told me I needed to 'breathe better'. Very helpful. Both I and my GP were gutted, as we both know things 'arent right'....
Almost a month ago, I felt like my head was about to explode. It was a headache I've never had before - like the left side of my brain was pulsing and burning. Before my hysterectomy (pelvic congestion syndrome++) at 24 I used to get stereotypical migraines. But this was different.
I went to bed in the dark for an hour in the hopes it would go away as I had to go to a meeting. In the dark, it felt like something in my head exploded, and there was a starburst in my left eye (It had been seeing fairy lights for a few weeks before this). I got up, went into the lounge, and realised something had gone seriously wrong. I couldn't see out of my left eye properly. Everything was blurry. Prior to this I had 5/6 sight in both eyes - better than normal! It was extremely light sensitive, and it was 'hallucinating'. By hallucinating, I mean that colours interchange with each other, fonts 'bleed' sideways when I look at them out of that eye, my field of vision was reduced, there are blank and black spots when I look at things, and lines seperate into two lines and bend around.
I put up with it for a week, then went to my GP. He sent away a referral to a neurologist (public health system here - so long delays...), and sent me straight to an opthomologist (so the hospital couldn't claim it was my eye causing probs). He did a battery of tests, which showed up everything I said above. Yet my eye itself is fine. No pressure, nerve is fine, cornea is fine, no burst blood vessels, good bloodflow. However the left eye had deteriorated to 6/36. He agreed it was neurological and sent a report saying so.
I flew across the country later that day for a meeting. I have to admit I was very scared. EDS people are at risk of aneurysm and I was freaking I'd stroke as the plane took off. Phew - that didn't happen! BUT, over the weekend, my eyesight and sensitivity deteriorated more.
So when I got back home, my partner dragged me into A&E. I should probably mention that our local hospital is TERRIBLE, not just with me, with many people. They misdiagnosed me for years (if you call pseudo-everything a diagnosis!), treated me like crap because they couldn't figure me out (took a geneticists report to prove to them I had EDS, CFS and POTS), and their poor care contributed to the death of my daughter, so it's fair to say my level of trust in them is 0%. I have panic attacks when I even walk through the doors. In the frame of mind I'm in, I refuse to go back. My partner has plans of packing me into the car and driving to the nearest tertiary hospital if things don't improve.
Anyway, back to the day at A&E, the emergency dr this time wasn't too bad. He did a comprehensive neuro reflex/sensation/coordination test, again, which showed no reflex issues, left sided numbness as described, and poor coordination on the left side. No CAT scan, no MRI, despite my pleas to please look inside my head. They gave me a pain killer injection which made me very anxious rather than calm my brain (my body reacts weirdly to meds, common in EDS). At first he was going with temporal arteritis, but decided no to that, and picked 'retinal migraines' instead. It'll get better soon, he said.
Not so. The pain, pressure and blindness has continued, and increased. Hubby dragged me back to my GP last week, and despite it being contraindicated for people with EDS, we decided to try Naproxen to see if it helped. It hasn't. And it has caused lots of surface blood vessels to burst (covered in bruises, worse than usual), so I have stopped taking them.
Now we're almost at a month, and I am going out of my mind. I am so sick of this. Nothing is helping, nothing.
I have: Left front of brain pressure - it's not pain, it's like something is pushing on my skull. The middle of the back of my head, is absolute agony. I am now almost blind in my left eye. I can't concentrate. My memory isn't working. I've developed wee spasms in either my eye or cheek when it gets really bad. I wear sunnies everywhere and it still hurts. My coordination and numbness in my left side is getting worse. I drop everything I try and carry or lift with my left arm. When I touch the left side of my face it feels weird. There is no decrease in these symptoms with any meds, sleep, diet or time of day.
My meds are: Metoprolol for tachycardia (POTS), Omeprazole (EDS causes reflux) Brufen, Tramadol and codeine as needed for joint & muscle pain (EDS), Baclofen for my muscle spasms (EDS), and Amytriptyline & Quetiapel for sleep (Dysautonomia means I just don't sleep...), and Ondansetron for the crippling nausea attacks I suffer from time to time (dysautonomia again...).
I have been researching almost full time over the last couple of days trying to figure out what the heck is really going on. My mother (Who I last saw when I was 15 and put into care, no contact since) was at first diagnosed with MS, at the same age as I am now. She is legally blind. She didn't have MS, but I never found out what she did have (except the geneticist informed me my maternal family has EDS). I know she went for brainstem surgery, so that was my starting point to figure out wtf....
I've got a 'shortlist' now of possibilities...
Chiari Malformation makes perfect sense. I have every symptom and its common in people with EDS. Problem is, I bet noone at my hospital would have ever heard of it.
Cerebral cavernous malformation also kinda fits.
Retinal migraine was a reasonable conclusion to come to - but it's been too long, and there are associated symptoms that don't fit.
Then of course, there's the usual possibilities - all of which can also be ruled out with one simple test - a bleepin MRI!!! Tumour, slow bleed, blah blah blah....
I'm left wondering what it takes to get an MRI at my local hospital. I'm starting to wonder if I need to present to the mortuary dead to get one!!!
I hate this, I can't handle it anymore. My head has been hurting and my eye hurting for so long now that I feel like I'm going insane. I don't know how to make anyone listen. My GP has listened, and tried, and has gone to the extent now of writing a letter I'm carrying in my purse outlining her concerns and possibilities in the hopes that it will force them into action (it begins with: If Rachael has presented to ED again, it means she is feeling worse and you need to act)....
But I just can't handle being mucked around one more time. I can't face going back there. Trying to figure out how to get this sorted is causing almost more stress than the actual pain and vision loss.
Sorry 😢
A very tired, stressed, in pain and desperate Rach.

  1. Hi Rach.

    Welcome to the discussion forum. Let me say how sorry I am about the loss of your daugher, I can't imagine anything much worse.

    It sounds like you have a lot to contend with, which must be frustrating, exhausting and as you said stressful. I'm not familiar with the health care system in NZ, but it sounds like it is adding to your frustration.

    I'm not sure if this is possible, but it sounds like it would be beneficial to seek out the expertise of a migraine specialist. I don't know anything about this site, but I did find a site for headache/migraine in NZ. Here is that link;


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