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Attention: head pressure, pressure in head, headache people!

Hello everyone, after suffering for nearly 2 years with a mysterious neurological-like condition, I have almost given up all hope of living a normal life again. After a whole lot of research on the net, I have run into several postings with people describing my condition almost down to the exact letter. However, many of these posts are on some obscure website with the postings being months or years old. The purpose of my post here is to *hopefully* unite those of us who suffer from this unexplained condition.

The one symptom that seems to bond us all together is a constant "pressure" sensation behind the forehead and beneath the front top of the head. The way people describe this varies according to personal expression, but it is usually best described as an expanding sensation behind the forehead as if the brain is growing larger with nowhere to go. The headache is dull, non-throbbing, and does not get worse with exercise. The patient will also describe a sort of "perpetual dizziness" that may be constant or may come and go again. Usually, but not allways the patient will describe the sensation of having a constantly blocked nose even in the absence of any type of discharge or sinus infection. Most but not all patients will describe a feeling of tension or stiffness in the cranial muscles, especially in the forehead.
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Avatar universal
Just just wanted to add my 2 cents here and own experience.

Firstly I see people mentioning ME/CFS, mercury poisoning, Lyme, Viruses. Fact is all these things can result in overlapping/similar symptoms, working out what applies to any given individual can be difficult but is also up to them, at some point you have to come to terms with what is going on then start reading endlessly and looking at your opinions.

I have had head, ear and jaw pressure for over 10 years now, including ME/CFS for over 13, after burning myself into the ground working, over exercising compensating for underlying stress. It took me about 8 years to realise how much of an issue my jaw and mild to moderate TMJ was causing me, so I am 11 months into Damon Braces and getting a horrendous crossbite fixed. Then I learnt several months ago I am also homozygous (mthfr mutations) which likely explains most of my symptoms over the years, it is even apparently linked to TMJ. So B12 now, methylfolate, Vit D, B complex to treat to the mutation and within weeks it was like someone scrubbed my brain clean and less pressure. It can still be a struggle but good ground is being made, it can take 12 or more months to fix the methylation cycle and juggle the B12 and methylfolate correctly.

Hypnosis has also helped me quite a bit over the past 12 months, I tried it to see if it could help my jaw. It has not fixed many issues but has taught me how to relax much more and deal with symptoms better when they crop up. If you are in a real struggle day to day it is worth looking into and giving a real go to potentially reduce symptoms and stress, just check its use for performing operations without anaesthetic.

For some who develop some of the mentioned symptoms throughout this discussion mthfr and methylation issues could be likely. Extensive gene test is only $99 these days through 23andme too, so it is something easy to check, could be some peoples answer.  
Helpful - 1
Avatar universal
so what is the diagnosis for the headaches, sinus pressure that is not from your sinuses??
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Avatar universal
Hello, I am sure this is late in the response game but in hopes it could aid with others experiencing Cerebellum ataxia but Dr's cannot tell you why. My mother had been diagnosed with Progressive Cerebellum Ataxia. They did not know what was causing it. She was tested for everything, lyme disease, Parkinsons, you name it. She has been progressively getting worse for year. Cane moved to walker, which moved to wheelchair and almost bed ridden. I asked her to consider one more doctor I had heard about for a new set of eyes to take a look at her. I wanted a full blood work done in hopes something would stand out. Well, she did and the blood work all came back fine but for   Thyroid Peroxidase (TPO) Ab  46high  Reference Range: 0-34 IU/mL      
Thyroglobulin Antibody 5.3high eference Range: 0.0-0.9 IU/mL

Her TSH and T4 all were normal.
This points to Hashimotos but I knew that mom's symptoms were not all consistent with Hashimotos and I feared them just slapping that diagnosis on her and treating her incorrectly. It has been so many years of Dr's treating her like a hypochondriac etc.

I found a very rare form of Hashimotos Encepalopathy with Progressive Cerebellum Ataxia. EVERY.SYMPTOM.MATCHED.

There are only a few dozen cases in the US but I believe many more that haven't been diagnosed yet or been told Lyme or MS etc.
This disease is treatable.
The hashimoto name causes problems with treatment and there are even articles published on changing the name of this diagnoses to autoimmune encephalopathy.

This disease not only attacks the thyroid, it is attacking the cerebellum.

It is treatable and many times reversible. I took my mother to the hospital in a wheel chair, she left able to use a walker. She can now walk straighter but we do not know how much she will recover. Many recover 100%. If you have any of the following symptoms, Please consider asking for the above referenced specific tests.

Mom specifically had:
Gait disturbance
Slurring
Memory loss
Dizziness
Sleeplessness
Pain
Jerking
Numbness
Headache
Could never stand with eyes closed as dizziness was overwhelming
No dizziness laying down
Vision issues (hard to describe)
plus more...

The slurring stopped the first day of IV Steroid treatment. We are only a week and a half away from the treatment being started so we have a long road ahead but I believe so many more need this diagnosis.

It also gave my mom something almost even more valuable than healing. It validated her and gave her a disease with a name.
I am in hopes this email helps someone else.
My personal email is ***@**** if you have any further questions. Sincerely, Rebecca Stanley

Here are some links to look this disease up:
https://cerebellumandataxias.biomedcentral.com/articles/10.1186/s40673-015-0034-y
http://n.neurology.org/content/41/2_Part_1/228
http://pubs.sciepub.com/ajmcr/4/6/5/index.html


Helpful - 0
Avatar universal
Hi, I have the same exact symptoms for more than 5 years. I did so many test. Doctors didn’t  believe me! I finally took it into my own hands! I got my vitamins tested and found out I was b6 toxic. Reference range is 2 - 21 mine was 300 thought it was an error, but it wasn’t. Toxic levels of b6 destroy your nervous system. Search Facebook group, healing b6 toxicity w/western research for help, has a lot of great info. It’s a very long painful road to recovery. Be sure to read the pinned post in the fb group. This b6 toxicity is misdiagnosed and not understood by most doctors. Wishing you the best and a full recovery. I feel your pain!
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Avatar universal
You are dehydrated & need water.Paracetamol or cream 5 stars with many species can relive pain. In future if there is cold weather wear a hat.
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1 Comments
If this is in answer to my comment. No, I am not dehydrated also I wear a hat in cold weather too.
Avatar universal
Citizen T, I literally woke up this morning feeling exactly as you describe!. That’s how I found your post!. No headache, no sinus sx’s(I keep massaging my forehead hoping there is congestion or something I don’t know about) but yes! It feels like my brain is pushing on my forehead or something is!. I feel “fuzzy” and it extends to the bridge of my nose and kinda to my eyes
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1 Comments
Small Vessel Ischemic patient with movement disorder left leg swelling and Ulnar neuropathy. Sleeping disorder continues with severe headache. Memory problem & No planning. Suicidal though sometimes. Change in mood and behaviour. I want to know whether these problems will be progressive & Brain would have damaged further.
Avatar universal
Get a hair mineral analysis.. 150$ on ebay... Heavy Metals are the problem...  Good Luck
Helpful - 0
Avatar universal
Hi citizen T my symptoms are exactly just like yours! I'm 33 and had this issue since 15 non stop. I'm on effexor and welbrutin. I'm not getting better. What meds are you on? I need help asap
Helpful - 0
Avatar universal
Hi citizen T my symptoms are exactly just like yours! I'm 33 and had this issue since 15 non stop. I'm on effexor and welbrutin. I'm not getting better. What meds are you on? I need help asap
Helpful - 0
Avatar universal
Hi citizen T my symptoms are exactly just like yours! I'm 33 and had this issue since 15 non stop. I'm on effexor and welbrutin. I'm not getting better. What meds are you on? I need help asap
Helpful - 0
Avatar universal
I had this terrible feeling of pressure inside my head for years as well as brain fog and various other odd symptoms. It progressed to the point I couldn't turn my head very far left or right and looking down was an issue. I was DX with with cervical instability and missing and slipped discs. Spine was fixed with plates and screws-no more pressure! Have a regular X-ray of neck with your head in turning positions, it will show if it's bad. I was 1 fall away from being paralyzed. Good luck!
Helpful - 0
20189950 tn?1492055321
I don't know if this will help anyone but I'm willing to try. I've had the head pressure for a few months my stiffness in my face is always there. Moves from my cheek to my jaw and around my nose. Feels like a heavy weight on my face I feel the muscles always moving as well. I've had so many tests finally found an answer I have Lyme. In case anyone has these issues get tested to make sure I wish I'd done it sooner. Right now I'm in treatment haven't noticed a change yet I'm hoping soon I will. Don't let any doctor tell you its all in you're head mine wasn't. When I finally got my answer it was a relief but my battle is just starting Lyme I know is tough to fight. So wish my luck and anyone reading this keep fighting. I know somedays will look bleak and with no end in site. Just keep holding on there will be a day when your not in pain anymore. Its what I keep telling myself everyday what gets me through until tomorrow.

Anyways wish you all the best I'll hopefully remember to check back here to write down how I'm doing. Keep fighting everyone.

- Wild
Helpful - 0
Avatar universal
https://nei.nih.gov/health/iih/intracranial
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Avatar universal
Did you check your thyroid hormone level?. I was diagnosed with high tsh level, I had panic attacks like stiffness of head muscle tightness of nose eyes pulled ear ringing, extremely sensitive to sounds or noise heart palpitations but all these were related to low hormone level. I am on levothyroxine 125 mcg that helped a lot. I quit it for 1 month after 2 years and I ve the same trauma.Dr advised never quit its for life.
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Avatar universal
Have you been tested for PoTS, read up about it and then there is a doctor in the States, New York, who can help you, his name is Dr Eric Kaplan, he is very different from any other doctor I know, and definitely can help, he helped me to diagnos my condition which is the same as most people have on this site, heavy feeling at the top of the head with head aches, dizziness and dehydration and bad concentration, plus a load of other ****. I've had it for years.if kapan can't help, he will put you in contact with someone that can.
Helpful - 0
Avatar universal
i had the cold i think for a week. i finally got better. but now every morning i wake up and with this pain on my forehead. right above my eyebrows and in the middle of of my forehead. it eventually goes away over time. but then its starts all over again the next morning. what the hell is this.i cant stand this pain anymore
Helpful - 0
Avatar universal
I have had similair symptoms as you, brett88. For the past 6 mths. It began with a strange feeling of lightheadedness, yet not lightheaded, not dizzy. Almost a floating feeling. My hands and feet felt strange, sometimes a slight tingle or a weak heavy feeling. An all over foggy feeling. My ability to make or hold a conversation is slim to none. Very little emotion. My head feels full, my ears too especially upon standing. A very loud wooshing sound as well as loss of hearing during these episodes. This just stinks. I dont know how to explain it to anyone.
Helpful - 0
1 Comments
Hi I am feeling the same thing at this time have u found out what it is...I have been for many test...still nothing gets worst when I hold my head back
Avatar universal
let me know if u hear of anything that helps. My symptoms are identical.  No one believes me.    They test me like I'm making this stuff up. It's hurts so bad at times.  I feel like any moment I'm going to die
Helpful - 0
Avatar universal
So my head and ears an e NOT going to explode?  What a relief  because I honestly thought I was gonna have an aneurysm or head exsposion.
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Avatar universal
Ok so I thought I was going crazy and the drs made me feel that way too. The gave me meds for allergies sinus and antibiotics. Nothing is working and the symptoms always move.  Every day its different. It started with 5 very small whaiye bumps on my throaght and then turned into my ears and head feeling like they are about to explode.  It's like I can feel and hear air moving in my head. I've been going to chiropractor.  Twice so far and he said he could fix me that it was pinched nerves cause of my neck hurting me so bad about 6 months ago.  What have u found out ?
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Avatar universal
Hey there!
My name is Ofelia and Ive been feeling this constsant pressure in my head too, for the past four weeks.
I was wondering if your neurologist ever came up with a diagnosis or if you just recovered naturally?
Thanks so much!
Helpful - 0
15160834 tn?1438808273
Migraine w/aura for 2 weeks.   Sinus Headache also.
No meds help - not even Norco.

Maybe future change of weather.
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15160834 tn?1438808273
me, too

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Avatar universal
Are any of you still out there? I know the original post was now years ago, but wondering if any of you have since gotten a diagnosis. I have read through almost every comment and have been having these issues for more than a year now, my symptoms are continually getting worse.
-continually popping my ears due to extreme pressure in my head
-neck pressure that feels like my neck is being compressed or someone is squeezing my neck, although I can still breathe.
-extreme dizziness/floaty feeling/constant feeling of spinning, sometimes to the point where I have trouble walking straight and cannot trust myself to drive
-sensitivity to sounds(new in the last couple of months)
-dull headache almost always that I've learned to live with, but at least 4 days per week, a terrible headache that goes align with the dizziness, head, ear, face & neck pressure
I have seen two ENTs who have so far not been able to find anything, had a VNG done to test for inner ear problems(came back fine), allergy testing(all negative), MRI on the bones surrounding my inner ear(normal), shots of Toradol almost weekly now(only improves headache for a short time and then it starts all over). Have tried chiropractic and therapeutic massage with no results. I have an appt with the neurologist next month but just wondering if any of you have gotten answers, as I am experiencing almost all the same symptoms that many of you are. It's almost like the pressure in my head and neck are up because I feel like my head it pulsating and at times, ready to explode because the pressure is SO much. Thank you in advance for any insight!
Helpful - 0
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