June 11, 2015 at 10:49 pm #849woodyParticipant
Hi all newbie here
For the past two years I have been having real problems with nausea, vision problems and “spinning out” as I have called it. I was diagnosed with EDS 3 15 years ago but these new symptoms have left me house bound for much of the time and unable to go out on my own. I cannot tolerate crowded places shopping is a no go, scanning the shelves will set me off my brain feels like there is a lot of pressure in it my eyes will hurt , feel sick and spin out. I feel like I am walking on a trampoline at times and i am holding onto the floor with my toes. When I am at home the symptoms are not so bad. Car travel is a no as watching from the window all the oncoming traffic will sent me off into a spin. When the symptoms are really bad I cannot talk properly, find the right words and just feel like I have a brain injury. Loud noise is horrid i become very anxious, go white, palpitations. OMG it is just horrid at the moment. I have finally got my Dr to refer me to a vestibular clinic to rule out an inner ear problem, but some of the symptoms just dont match up with that. You usually have flare ups but this has been continuous for 2 years. Sorry my first post is such a rambling one, but I feel so exited I have found this forum Dr Driscoll I feel is an angel for what she is doing. I also have fluid that comes from nose which I didn’t realize could be connected until I watched the videos. When this first happened I called 999 and they took me to A &E had a brain scan as they thought I had had a stroke but nothing was found and I was sent home. Now I am thinking maybe I need to get hold of this scan to see if it is something else. Thanks for listening to my ramble and advice about these symptoms as I am at a loss. 😉June 12, 2015 at 6:48 am #5536BarbaraParticipant
I know exactly how you feel but I have suffered a head and neck injury, which left me with all the problems you are describing. Have you ever had such an injury ? A couple of years later I paid for a referral to the ‘autonomic unit’ in London, after getting nowhere with the NHS. They diagnosed me with a few things – features of POTS, peripheral vestibular dysfunction, mild radiculopathy and small fibre neuropathy, namely. I had intermittent symptoms of other things like swallowing issues but, if you’re not symptomatic at the time of testing, diagnoses for the cause of these seem impossible to get.
Going back to you though, I wonder, could the spin out be contributed to by ‘lack of sufficient blood delivery to the brain’, do you think? i.e. Does sitting down resolve it ? Or do you think it could be ‘information overload to the brain’ – I totally get that ?
I use a powerchair, so there’s little exertion when I’m out and about but, even so and with someone to carry the shopping, it still absolutely drains me, I don’t get it, how can I be more active at home and yet still fresher than after an hours shopping, I wonder if it’s something to do with the repetitive head movement.June 12, 2015 at 8:59 am #5538woodyParticipant
I am sorry to hear you are having the same issues. It is so confusing how you can be relatively ok at home but a wreck outside. I to have been to the autonomic testing in London Dr Ingle I think but as you say unfortunately and typically I was fine on that day. He did say I had features of pots and I have a follow up appointment in Dec. It was Dr Ingle who questioned if it was possibly a vestibular prob so that is the next test. I did have the veins in my neck checked for blood supply and this was ok. The spinning out does not stop when I am sitting down. I had a brain scan at the beginning of this so I am thinking of getting it sent to London to discuss with Dr Ingle if there is anything he can see from this scan. I recently had a neck x-ray and they have found some wear and tear at C5 C6. I have also had intermittent problems with swallowing and almost hyperventilating at times not feeling like I am getting enough breath in. When I am out and it is bad I do feel like it is a complete info overload for my brain and often find I just have to shut my eyes to try and get it under control.
I am not convinced it is a vestibular problem as it just seems my brain is not working properly when its really bad. I have said to friends I feel like I have a brain injury. I have no info regarding some of the things you say you were diagnosed with so I shall end this and go on another search to see if any are relevant. Many thanks for your reply it has helped a lot. Gosh it has taken me so long to type this so many mistakes, wobbly brain syndrome. 🙂 🙂 Linda
I have had a read of all your diagnosed issues, very interesting it will give me more info to explore when I next go to Chichester hospital for my neck physio as I believe I am also having these probs, burning sensation and loss of strength in left arm and extreme nerve pain down left arm. 🙂 🙂January 12, 2016 at 8:52 am #5786amyhospParticipant
Hi! I just noticed your post and if you wuld like more feed back you can copy your post and post it under another topic on the board. This discussion has been closed for a long time so it has not been seen by many people. If you would like you could even copy and paste the whole discussion you have had here. I know others would like to read your post.
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