Hi Peony
Thinking of you all for today.
So my symptoms started completely out of the blue when I was 37 weeks pregnant in May 2018
I am nearly 35 and I was 32 at that time. Up until that point I had never had a history of headaches, migranes, diziness or ear issues. I woke up feeling really off in my vision and my ears were really blocked. Then the tinnitus started and then over the course of the week I was extremely dizzy with bouts of spinning vertigo and 24/7 derealisation. Then I would say a week or so after my head would feel like it was going to explode and I get bouts of extreme pulsing head pain on the slightest movement.
They said it was labrynthitus then after 6 weeks there was no improvement so then I was diagnosed with vestibular migranes. I tried several migrane preventatives of which none helped. Then I started to notice when I would stand in particular I get a rise in pressure and my chest, neck and head restricts and it feels like flow trying to pass through a pin hole and then I will hear this Doppler type vibrating whooshing. Then nose started leaking. They suspected a spinal leak so I had a blood patch and this didn’t make a difference so apart from tinnitus becoming louder.
I then had my mri reviewed by Kjetil Larsen at msk neurology who pointed out that I had pretty significant bilateral jugular vein compression and optic nerve sheath dilation and some other signs of high pressure. However ophthalmology said all normal but my neuro agreed that I had optic dilation on mri and some flattening on the back of my eyes.
Someone mentioned eagles on another group to me. I had never heard of it so I booked with mr axon. Who was direct but thorough. I also mentioned to him that I get pain under my jaw almost like a gland feeling but mainly on my right side and I get a hoarse voice a lot of the time. He then suggested a Ctv with contrast so I was put on the nhs list but as you can imagine the wait is long especially with Covid.
So I made the decision to have it done privately for £1185 at the spire Lea private hospital in Cambridge 10’days later
In the interim I asked my dentist if they could do an opg scan £20 so I could see for myself if styloids were visible and they were. But hard to gage the severity
Got my results a few days ago and here I am now awaiting a follow up to discuss the compression And next steps
I have a long history of nocturnal teeth grinding since having braces and watched an interesting video on YouTube from Dr Hauser at caring medical who talks about eagles & earnest and how repetitive traction can cause the styloid process to grow. So maybe that’s what happened for me
The severe episodes I feel like a diabetic who is going low. I often need something sugary and I will shake. I think it’s when my blood sugars suddenly drop and I have low blood pressure in general. And I become completely detached from reality.
Sounds so crazy.
We are all thinking of you for today. If your daughter ends up having a ctv I would ask for a copy of the scan on cd. I got mine the same day. I can then help and talk you through a few programmes to use and how you can convert them in to 3D whilst you await the results.
Sorry for the waffle but some of it may help.
Keep us posted and good luck