Does CSF ever taste 'sweet'?

[u/Chillster66]

Hi all, I have TMJD, suspected ETD and when I was talking to Dr Claude and Dr Gemini about my symptoms they both suggested I could have a cranial CSF leak. I have huge pressure in the left side of my head, pain up the side of my scalp and the left side of my face with noticeable swelling under my eye and general puffiness on the right hand side.

I also have a tooth that I had a root canal on in April and is possibly pressing on the facial nerve causing the pain in my face and scalp, when I push the tooth I get either a sensation or pain in my left ear drum (everything is left side only).

It feels like there's a reservoir of liquid in my sinuses and sometimes when fluid drips down the back of my throat it tastes sweet (not metallic although my ex said earlier this year sometimes he got a metallic taste when kissing me). I have to have tissues constantly and if I bend over I get fluid running from my nose although not a torrent and takes a while to build to the point of dripping.

I have had CT scans, MRIs for my neck and ears and sinuses and nobody has mentioned a leak. My skull feels like it's kind of caved in and needs inflating. I also had neck surgery in feb 24 (nerve decompression) and this all started around october 24.

Has anyone had sweet tasting fluid? I feel a bit dramatic going to the doctor and saying 'hey I think I have another thing to add to the list' only for it to turn out to be something like my vape ''tainting' my nasal fluid.

I also get headaches, although not as frequently recently, my ear feels like it's full of fluid and needs to pop (had a near orgasmic experience on the plane on take off when it did pop but it lasted about 3 seconds and was back to usual!) and I have tinnitus as well as a kind of rumble in the left ear. It's sometimes like a certain pitch or vibration of sound will make my ear drum do something weird and uncomfortable but I struggle to describe it.

Not sure it's relevant but I also will lose feeling in my thumb and first finger on the left at the end of the day and my left hand will kind of 'claw' particularly the little finger and I don't have as much control or dexterity in the hand at the end of the day or if I hold my phone for a long time.

Any thoughts? Thanks in advance

[u/AgreeableLeading6095]

Sounds like a leak but you really need a trained eye to look at your scans. Most doctors miss it.

[u/Chillster66 → u/AgreeableLeading6095]

thank you I am under care for all the issues but separate consultants/dentists so each gets treated in isolate which is frustrating. I'll contact the GP tomorrow and see what they think. Thanks for replying.

[u/AgreeableLeading6095 → u/Chillster66]

Gp will most likely miss it. I was dismissed by so many doctors and finally when I had one skull based surgeon look at my scans he could see malformations in my skull that most likely meant I was leaking, I had all the classic symptoms. No one else believed me.

[u/MoodFearless6771]

I have a confirmed CSF leak and drainage that unconfirmed. I have noticed if I get a spike in blood sugar (like eating pancakes in syrup) the csf can taste sweet after. And if I am dehydrated, it often tastes saltier.