This is a bit hard to describe, but I will try-- over the last while I've been noticing something really strange happening--
every once and a while, I will be sitting up, and feel pressure start building around the back of my head and down the back of my neck. It almost feels like the area is swelling or something, and then all of a sudden it feels really heavy and swollen, and somewhat uncomfortable--
then I feel this strange sensation deep inside the vessels that feels like fluid is quickly draining from my head, down the back of my neck (but deep inside)-- it isn't really painful, and only lasts a few seconds-- sometimes I can almost hear the fluid draining. Its kind of been making me wonder what is going on because I don't remember always having this phenomenon occur. Does anyone else understand this, and possibly have experienced something similar to this? If so, do you have any idea what it is?
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behcetshurtsbeyondwords
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Hi, with regards to the back of head and neck pain I have been diagnosed with degenerative spondylitis which I thought was separate from my BD but after following several blogs with others suffering same pain....I wonder?? As for the fluid, I have been complaining of this for years but mine is more my ears but docs tell me nothing is wrong. Just had a brain scan due to hade, neck ear and dizziness. Lovely doc said nothing at all wrong with my brain and not BD but he thinks could be my ears so back to my GP in couple weeks and now perhaps he will listen to me. Don't know if any of this helps .
I once had a very silly situation with something very similar to this about 4 years ago. It had been building up for a few months getting progressively worse and it was accompanied by a severe pain in my left ear that kept making me really dizzy when the fluid feeling went down my neck at the back. One night it got so bad I was forced to go to A & E and fortunately (??) the head of the ENT Dept was on site so he took me to the examination room for a good look around.
Having waited over 45 minutes because he couldn't then find one of those torch things they poke in your ear because they had all been nicked from the department or were in other doctors pockets as they walked around the hospital, he started to poke things in my vey painful ear canal that had almost closed up with inflammation and caused me to cry with pain.
It was his assumption that this strange feeling you describe that I also had was to do with the sinuses somehow (?) and so he decided to stick a machine thing like a hoover in my ear that seemed to suck my brains out and dispense of it down a tube and exclaimed that I had severe ear wax in that ear and I shouldn't be ashamed of it as it was quite common. (I wasn't ? and I didn't know I had bad ear wax and he never attempted to look at the other ear either which I thought very odd.)
Anyway, having sucked the best part of my brain out with this vacuum thingy and left me tottering all over the place very dizzy and in considerable pain, he exclaimed that what I actually had was arthritis in the ear. Knowing BD could resemble arthritis I took his word as gospel and went home to drown my sorrows in painkillers.
A few weeks later, although the feelings in my neck had subsided to virtually nothing by now (nothing to do with what the ENT doctor did but just simply by itself later) I went for my usual appointment with my rheumy who I trust implicitly. I told him the story of the ENT experience and he told me it was a complete and utter load of old twaddle and there was no such thing as arthritis in the ear. He asked who this stupid man was that I saw there and when I said it was the head of the ENT Dept he was amazed and broke out into a loud belly laugh with tears running down his face.
We agreed from there on that I would call him with any problems like this and give A & E a wide berth in future.
I would suggest you call your specialist ( hopefully at one of the C of E's now) and tell them about your problem and see what they recommend.
I totally get the first part of your message - I have immense pressure on my spine between my shoulders. It feels like something is weighting down on that area. And it does feel worse when standing or sitting. I also get tingling sensations mostly towards my neck, skull, ears and also in my cheeks. I guess it's the nerve endings. Very strange sensation.
I know this is getting off the track however just wanting to add my little bit - more about wax in the ears. About a month ago I started to get a lot of pain going down into my jaw. Couldn't get my ears washed out at GP (long story) so ended up going to the chemist and buying some drops to put in and soften the wax. Over about four days the pain slowly subsided and a bit of wax came out.
I've suffered from vertigo off an on after two whiplash car accidents years ago so am very conscious of how much the ears can affect us balance wise.
Hi Erssie and everyone - this might be of interest :
I suffer from this icy feeling in various places of the body, including the soles of my feet, and a neurologist recently told me it is probably pain however the brain is getting the wrong message. I found rubbing Voltaren on the area did make the icy feeling go away so it could be right.
Thanks everyone for your responses I don't think it is actually fluid draining, but rather just a strange nerve sensation. Its happening right now as I write this-- although it sure does feel like blood is trying to flow through inflamed blood vessels and suddenly it gets pushed through. Everything has tightened up in that area, making it feel very heavy and swollen and there is a burning pain deep inside. Who knows what it is exactly-- I don't think I'll ever know for sure, as so much is a mystery with Behcet's.
Also, about the arthritis in the ears-- I would assume that it can happen because there is bones deep inside the ears. It wouldn't be normal joint-type arthritis, but the immune system attacks anywhere in the body with systemic autoimmune diseases, so I would think it is possible.
Just curious, have you looked into chiari or syringomyelia? I know I'm 4 years late to respond, but by chance when you hear the fluid, is it more obvious when laying down? Do you feel that pressure when laying against your spine? And last, does the fluid sound like sand running through a straw?
YES!YES! that is what I've been having, I've tried to explain to doctors and friends and people look at me as I'm crazy! What does this mean?
The past week I have been so dizzy (I guess, I'm not sure what else to call it) almost like a spinal headache. I had one of those in think it was in 2008 or 09. Took the doctor a week to do anything because they didn't believe me. Anyway I have the same type of feeling laying down and worse when I sit up or stand. I'm scared something is really wrong with me. Last time I had this episode I had so many tests and told so many different things I just don't want to go though it again. I've been explaining like an hour Glass draining in the back of my neck and it lasts a few seconds. Awhile back I'd have them very rarely but now it's several times a day. Does anyone know what this means?
Im all crazy late to this but I said the same thing as I read all the comments. A Chiari ! I had very similar symptoms and in fact actually had a chiari 1 malformation on my brain.
i experienced something sililar. it felt like my neck opened up(on the inside) and fluid was slowly coming down my neck, down to my shoulders and down my arms. the whole time it was burning me and the pain was too incredable to describe. i've experienced this before but never to this extent or with so much pain! this time it lasted 12 mins.and i was begging God to make it stop. Does anyone know what this is?
I have a few questions as I suffer from similar symptoms for over 11 years. Is there any pre sensation trigger? Like for me, if I move wrong or turn my head i hear a noise like velcro being separated in my ears, and then the trickle of fluid. I feel the fluid trickle deep in my neck and hear it in my ears. After the fluid trickling sensation you get, do you also have a severe headache? Like your brain is pushing out on your skull? I have been to several doctors that just give me a funny look and write it off as nothing. but it is something, its debilitating.
I know what you mean have had the severe headaches for a while now and all they give me is panadeine forte which helps a little bit and also I’am sure they think I’am weird and it makes u so sick!! 🌺
I have felt a similar symptom... of all a sudden I feel an overwhelming feeling of tightness in my back between my shoulder blades and it runs down both arms that is nearly paralizing. It feels like a fullness in my blood vessels & prickliness where I can hardly move. I too have wondered what this is. I have mentioned it to a doctor but he dismissed it. I feel like people don’t know a lot about it. It is only felt from time to time and not frequent, but still is concerning. I would like to know what it is called and what brings it on...
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Hi my name is MICHAELLA and I'm new to the group
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