Every day whe I wake my brain feels like a massive swollen gland rolling around in my head without an anchor. It takes about an hour to land my brain. It feels like when you have a bruise and you press on it. The sensation is not pain but something like that feeling. I also have uncomfortable feelings and even pain at times in my brain. Can Anyone relate to these symptoms?
Hi Phoebe 
These weird sensations in the head are so difficult to describe.
First thing in the morning I usually feel horrendous after I get out of bed and stand up.
Lying still in bed I feel as though I could take on the world, of course that feeling doesn’t last
and I still get that feeling of disappointment when reality kicks in.
Some people liken the ‘heady sensation’ to brain fog, if you know what I mean. If this is
accompanied by pain, then perhaps need to discuss with your Neurologist, just to put your mind
at rest.
After others have read your post, you may find that someone identifies with exactly what you
experience and hopefully can pass on helpful advice xB
Hello Phoebe,
Just like Beryl, I feel fine when I wake up in the morning, but the instant I stand up, yes, I feel like a hangover. No loose brain rolling around in by head like you though:-) but cotton brain, fuzzy brain and that’s how I feel for the rest of the day until I go to sleep…
What strange creatures we have become with rolling brains, foggy brains and fuzzy cotton brains… 
in a few hundred years, we might be in the museum of Natural Sciences , or may be Science Fiction…
Joking aside, I would do what Beryl suggested, check with your doctor about the pain.
Best wishes to you
Cicina
It is difficult to describe a "feeling" technically, but I will give it a try. I have a "similar" thing. When I awake' there is a"pain" type sensation that seems to be located in about a 1/2" groove that begins at the rear of one ear and runs across the skull to the rear of the other ear. It is not a true pain, but feels more like a swollen line wih sensations akin to and ingrown hair or pimple type of pain. The line(groove) seems to run between the top of or the separation between the spine and skull. I can press hard across the line and it seems that I can get relief after. Well, that is close to the cerebellum (the ultimate cause of our balance) so I think that it may be meaningfull. So perhaps it is some sort of inflamation. After I am up and moving it is not bothersome, but if I press along the area I know that it is still there, in a diminished state. So, I just just keep on palpating the thing -hard. Maybe I'll try some ice. I don't think that this helps you, but it makes me curious now that others are showing a similrar thing. I do intend to bring it up with the neuro and PMC. Another thing, I know that I have some arthritis in my neck so perhaps the chiro. or just a massage might help.
Yes,me too !I actually feel guilt as if I've done something wrong..Least you know we're not alone.Phoebe..I'm sure many others will have similar or worse experiences then ours..Take care..Ozzy
mine feel like a brick on my head and drives me crazy...sometimes its there all day, others just a few minutes to hours and some not at all....when I first came down with ataxia 4 years ago the thereapist didn't understand me when I kept telling her to get that brick feeling out of my head...and they still don't...it is a lot less now than at the beginning though. But I do know when I am stressed trying to walk, and visual at the same time it def comes back hard during that time and exhaust me and then I want to sleep...as if I have ran a marathon...
Crazy as it is, I’m happy that it’s not just me. I can feel this weird feeling sometimes when I turn my neck to look at things or I look over my shoulder.
Silkybill the pain is just as you describe. Like a groove!
Silkybill and Phoebe...I have exactally the same feelings. It's just what and where you said, but it starts when I wake up, (that I notice maybe it's there all night) and stays and stays and stays and the ringing in my ears is also torture. I wonder too, if the back part of my brain going to my spinal cord is swollen or something. Pressure to that area also helps to relieve the pain. I start stumbling and tripping soon as I get out of bed! I also have that "cotton brain" feeling all the time. Very stange uncomfortable feeling.
thats normal i think for people with ataxia
I can related to what is said. However, if it's the same thing, I don't know. It can take me a couple hours before it clears up in the morning. Some mornings I can be lucky, and it's not too bad. If I am more tired later in the day, it comes back. I can't say that there is pain, but certainly a pressure. I definitely have the brain fog.
That’s a really good description. I’d never heard it put like that before.
I’m currently having an exacerbation of symptoms and that’s how I feel now. I’ve been going too hard at the gym and not sleeping enough. And I’ve been stressed out. That always makes things worse. I get better when I make myself sleep and relax for about a week.
mine started yesterday! my brain spins, not the walls, it's my brian. just thinking makes it spin. can this be helped? maybe its weather. i get hot, after dressing for the cold.
I too wake up and feel as though my brain is swollen in the back of my head. Usually goes away after a couple of hours unless I am really tired. No point of even talking to my nero, he knows nothing about ataxia. I also have bad ringing in my ears.
Sandra
I used to be irritated with my neuro. for the same reasons that he didn't seem to know any more than I did. I have now modified. These guys really don't know. They are all trying to guess what might work. There aren't any guarrantees. If you can demonstrate that you understand his/her problem and if he/she is willing to try suggestions, that is about as good as you can get.
Ha Ha!! I agree! When I talk to my neuro and tell her something that's going on with me, she says "I don't know what that could be..." altho I hear you guys complain about the same thing!
Silkybill said:
I used to be irritated with my neuro. for the same reasons that he didn't seem to know any more than I did. I have now modified. These guys really don't know. They are all trying to guess what might work. There aren't any guarrantees. If you can demonstrate that you understand his/her problem and if he/she is willing to try suggestions, that is about as good as you can get.
I have that 'cotton feeling' or that 'out there dizziness' probably about 70% of the day and it can be quite bad (almost to the point of fainting). My head feels really heavy like my brain is a wet sponge where once it used to be dry and light and I could think clear thoughts I've fallen into the road a couple of times with it but thankfully it was in traffic calming zones so cars were going slowly enough to avoid me but the stumbling/tripping does seem to be increasing alot. I also have headaches 24/7 and suffer regular migraines. However, personally, in all honesty I have several different ailments including two forms of ataxia and two of neuropathy and cerebral & cerebellum atrophy so although I have symptoms of the higher end of the ataxia scale I cannot put it all down to ataxia and my Neuro and GP don't seem to have a clue or don't like talking about it because every-time I broach the subject with my Neuro he/she ignores the subject and either does more tests (and always seem to find something else) last time it was cognitive decline so i'm currently and have been for the last 6 months waiting for an appointment to the young dementia clinic...I think they think that if they leave it long enough i'll forget about the appointment lol. They just keep changing my drugs saying that they are trying to find the right balance to control the neuropathy and epilepsy. Whether they are trying to do that and then deal with the ataxia I really don't know or maybe they think that they share a lot of the symptoms so the same drugs will control (to some extent) all of them but it is the ataxia that seems to be giving me the most trouble. I've noticed lately that I have vertigo. I looked over the balcony at uni and felt seriously panicked, nauseous, and dizzy and things seem to appear to move, I was looking at the striped carpet on the stairs the other day and it started moving side to side, a subtle little movement, maybe quarter of an inch or so and only this morning I was stood emptying my bladder unconsciously looking at the products on the bathroom window sill about four feet away and a tin of shaving gel began moving. The daylight also hurts my eyes like hell, it doesn't have to be sun shiny just bright and my eyes start watering and squinting. Has anybody else noticed any of these symptoms please?
ME JANE said:
Silkybill and Phoebe...I have exactally the same feelings. It's just what and where you said, but it starts when I wake up, (that I notice maybe it's there all night) and stays and stays and stays and the ringing in my ears is also torture. I wonder too, if the back part of my brain going to my spinal cord is swollen or something. Pressure to that area also helps to relieve the pain. I start stumbling and tripping soon as I get out of bed! I also have that "cotton brain" feeling all the time. Very stange uncomfortable feeling.
i relate to your symptoms. It's an awful feeling. i suffer vertigo and dizziness too. Do you?