Hi, I'm Reeta, I'm from the UK and I have a slight problem.
I have ehlers danlos syndrome, type 3 (hyper mobility) and postural orthostatic tachycardia syndrome.
If you haven't heard of either then you are in great company. Most Drs haven't heard of EDS though more have heard of POTs. I also suffer from tinnitus.
I have been to my Drs a few times about an issue I have which is a clear water fluid running from my left nostril and headaches. It happens when I lean over, as if to pick up something from the floor, and sometimes in my sleep- I actually wake up from a headache and literally as I move to get up the fluid runs from my nostril- only my left.
I don't always get the intense headache (to the point of crying) but do get a dull ache sometimes. I'm unsure if my pain tolerance helps me with this, the EDS causes chronic widespread pain from dislocations and micro trauma to joints- like bad arthritis- so I can handle a LOT of pain before it gets past a level 2/3 on the scale.
When I say it runs out of my nose, I mean it literally runs and then slows to a drip.
It's a clear fluid and it doesn't crust up on tissue or clothes like mucus does.
The headaches I get are like a vice around my head and I get very sound sensitive and it's like my hearing goes into hyper mode and every little noise is magnified and unbearable, there's no light sensitivity. Laying down flat helps but doesn't allievate them. As I suffer from pain all over my body I'm unsure if the neck pain is related to the headaches or just general neck pain.
Everytime I talk to my gp about it they insist its sinusitis as I seem to have an inflamed/stuffy (but no mucus) nose most of the time- though no other symptoms of sinusitis at all.
I've tried the nasal sprays but they make no difference to the leaking fluid or my nose. It's not a constant thing either, it might happen for a number of days in a row and then not happen for months.
I'm really getting bothered by it though- more so the headaches but if it is a CSF leak I know that could be dangerous and lead to possible infections.
Do my symptoms sound familiar to anyone at all?
I have ehlers danlos syndrome, type 3 (hyper mobility) and postural orthostatic tachycardia syndrome.
If you haven't heard of either then you are in great company. Most Drs haven't heard of EDS though more have heard of POTs. I also suffer from tinnitus.
I have been to my Drs a few times about an issue I have which is a clear water fluid running from my left nostril and headaches. It happens when I lean over, as if to pick up something from the floor, and sometimes in my sleep- I actually wake up from a headache and literally as I move to get up the fluid runs from my nostril- only my left.
I don't always get the intense headache (to the point of crying) but do get a dull ache sometimes. I'm unsure if my pain tolerance helps me with this, the EDS causes chronic widespread pain from dislocations and micro trauma to joints- like bad arthritis- so I can handle a LOT of pain before it gets past a level 2/3 on the scale.
When I say it runs out of my nose, I mean it literally runs and then slows to a drip.
It's a clear fluid and it doesn't crust up on tissue or clothes like mucus does.
The headaches I get are like a vice around my head and I get very sound sensitive and it's like my hearing goes into hyper mode and every little noise is magnified and unbearable, there's no light sensitivity. Laying down flat helps but doesn't allievate them. As I suffer from pain all over my body I'm unsure if the neck pain is related to the headaches or just general neck pain.
Everytime I talk to my gp about it they insist its sinusitis as I seem to have an inflamed/stuffy (but no mucus) nose most of the time- though no other symptoms of sinusitis at all.
I've tried the nasal sprays but they make no difference to the leaking fluid or my nose. It's not a constant thing either, it might happen for a number of days in a row and then not happen for months.
I'm really getting bothered by it though- more so the headaches but if it is a CSF leak I know that could be dangerous and lead to possible infections.
Do my symptoms sound familiar to anyone at all?
Comment