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

[Citizen T]

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.

[Citizen T]

Also, a lot of sufferers may describe the sensation that a heavy weight is sitting on top of their head all the time. A few sufferers describe visual hallucinations such as black streaks out of the corner of their eyes especially early on in the course of the illness.



Every one of us have been to multiple doctors, neurologists, ENT, even chiro's with no answers. We have been mocked by doctors, brushed aside, referred to psychiatrists, and have lost our ability to live a normal life. We have all have the usual brain scans and bloodwork which all appears normal. When we first started feeling bad, we all thought we were dying, but we're still alive and kicking but we are in serious discomfort all the time. We have thought of all the possibilities such as environmental factors in our homes.



Please reply and describe what is going on with you if this describes you. I would like to actually accomplish something here rather than just swap stories. I'm really sick of feeling like this. I don't know what I want to do yet, maybe start a petition describing our problem and one of us take it to the Mayo Clinic or something. I am actually convinced that we have an illness that is yet to be discovered.

[Citizen T]

I forgot to add that almost all of us also feel like we are living in a perpetual dream-like state, a very frightening state of mind.

[kitlyn]

HI I had to respond to the, "head pressure" post. I has never ever had this until August 2006. It began suddenly. I thought i was literally dying i felt so badly. The pressure sometimes crawl up my neck into my head..but i awoke most mornings w this. I can take a lot..and i did for Aug and finally in late August sawa neurologist. It felt for me like i was going a million miles an hour on a roller coaster..it would also cause me to feel like weakness going into my arm. The Neurologist said that this was most likly emotional I knew it was something. However , my MRI was NOt normal, and i have two spots . I came online to see what others had head pressure. Even in one ER thye were baffled w it , and said they had no idea what it was  and said it wa snerves. I thought maybe a pinched nerve in neck could also cause , but anyway.. what other symptoms do you have . Mine is most likly diff than yours. I am getting a lumbar puncture .Take care and your not alone. Kit

[KIENOW]

Wow...it sounds like me..here are my symptoms:  dull/pressure headaches,dizziness,concentration issues,fatigued,ear plugged,   I am a 32 year old male who before this played hoops every night lifted weights, ect.  Fun loving person who had/has everything...great family/ ect.  So I have had all the blood tests and MRIs..everything checked out fine.  Had two spinal taps where my opening pressure was 40cc and 28cc..also a flo study of my spinal fluid.  The doc diagnosed me with a pseudotumor but have had second/third opinions that say I have a brain virus..It has made me into a person I don't even know...I sometimes feel better at night and first thing in the morning....also have severe anxiety over this..Have thought about going to Mayo..The last seven months have been awful...The best way to explain how I am feeling is severly hung over...

Take Care You're not alone

Scott

[mineandours]

Hi everyone...Neurological Lyme disease can cause these problems. Once that bacteria penetrates the pristine environment of the central nervous system, all sorts of bizarre things happen. Doctors don't know about it or its co-infections---even at the best hospitals.  If you want to be properly tested and diagnosed and treated, your only recourse is to find a Lyme specialist.  (www.LymeNet.org)  I'm not saying this is for certain what is wrong, but it certainly warrants investigation.

Been there, done that for two years and saw 14 doctors. Was ridiculed, brushed aside, shouted out and condescended to. Lyme can evade detection in BOTH blood and spinal fluid so it is ultimately a clinical diagnosis. You don't have to recall a bite or have gotten the rash to get it. I sure didn't.



Musculoskeletal System

Joint pain or swelling or tenderness

Stiffness of joints, back, neck

Muscle pain or cramps

Bone pain



Neurological System

Tremors or unexplained shaking (especially at night)

Burning or stabbing sensations in the body

Weakness or partial paralysis/stroke-like symptoms

Pressure in the head

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Sudden jerking of fingers or entire limbs

Pain in spinal column



General Well-being

Unexplained weight gain, loss

Extreme fatigue

Swollen glands

Unexplained fevers (high or low grade)

Continual infections (sinus, kidney, eye, etc.)

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well.  (If it was mild, you may not even recall this.)



Eyes/Vision

Double, blurry or dim vision

Increased floating spots

Pain in/behind eyes, or swelling around eyes

Over sensitivity to light

Flashing lights

Optic neuritis



Ears/Hearing

Decreased hearing in one or both ears

Buzzing or clicking noises in ears

Pain in ears or sound sensitivity

Ringing in one or both ears

Pressure or feeling of fullness in ears