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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.
280 Responses
Avatar universal
Yes Im sufferinf from the same thing I cant get rid of my head ahes and have a lot of pressure im suferring every day . im in my 30s I have been told I tmj but dont   know any more My head aches will not go away in in pain  with my head eyes jaw face neck  sholders and head alot  I dont know what to do . Where do u liveHeather Do u live in Nc If so I  had to go to Babtise  Hos  and have to see see a head  ache spec. That might be the bst thing to do Get a Refferle from your Dr to see one   I aso feel like I have been puched in the nose the face ect. Its driving me crazy Im offten in tears.   Heather t68 Go to the Hos first of all to get every thing checked out and stuff. u dont have jaw pain do u? well I just thought I would put that in there and I hope this  helps u out . can some one tell me what it mignht be other than tmj
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can any one help me with my cronic head aches that I have around my eyes jaw  and the side of  my head and alot of Pressure its been going on for really a year please herlp me please
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But I had a break for about two half months then it came back it has been going on for two months now  cant get rid of it
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have you looked at Lyme?
Avatar universal
I to have been suffering from pressure headaches for the past year an a half. Ive had numbers of test am startin to feel like a lab rat. Doc doesnt have a clue what the problem is and i feel like they r startin to doubt me. Feels like im walkin around in a dream like trance. Feels like all the blood is rushing to my brain. Sometimes i have trouble with speech as well and memory too. If any one has any clues to what this is please share.
Avatar universal
There are several excellent remedies for the multiple symptoms given on this forum.  I would like to add a couple of things that I did not see mentioned.  The first is going to see a naturopathic physician. This is an MD that also specializes in homeopathic or natural medicine such as those derived from nature.  Also, have your HAIR tested - many of the symptoms could be caused by a vitamin or mineral deficiency.  Lack of magnesium, zinc, iron, or other trace metals or minerals can cause brain fog.  Another suggestion is to visit a DENTIST.  Headaches can be caused by misalignment of the jaw, clenching teeth or grinding teeh when you sleep, or impacted teeth.  Some people actually have more than the standard 2 sets of teeth, and these extra teeth could be the culprits.  Lastly, check to see if all of your symptoms are part of a SYNDROME - I have a child with Velo-Cardio-Facial Syndrome (VCFS) which has over 100 symptoms associated with it. There are specialists who deal with these syndromes and they may offer help where neurologists, psychiatrists, and immunologists can't.
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Hi, I just read your post. You posted a while ago, and I'm wondering if you are better. I was just online on the Mayo Clinic site--looking for answeres to my continual head pressure--and I saw a post from a woman who went there because of her severe headaches. She was eventually diagnosed with hemicrania continua. it is rare, but treatable with medication. Perhaps you could research that condition. I pray that you are feeling better. You are too young to have this pain. My son suffers from ocular migraines, but has not gotten one since he was placed on Inderal. Take care.
Avatar universal
Ive had this for about 4 years now. Each doctor has not taken it seriously neither family. No one in day to day life seem to understand the concept. A constant heavy pressure, that feels like its coming through your ears. Dizzy moments which are more rare, but a lack of focus is also constant.
I had an interview recently and literally felt like I was watching a face, or a person in a different dimension altogether, and this happens at work a lot too. You seem to learn to live with it and thank god I got the promotion,  but one part of my review was "seemed like I may have not been getting to the point at time". Luckily I can be very efficient when not in a moment of shear confusion, pressure and being on a 'different planet'.

There is no real pattern either, the pressure can be equally as bad sitting, sat or lying down...in fact getting to sleep also becomes a problem at times.
No other symptoms of a blocked nose ect though.

"dream like trance" is a perfect way to describe life...and speech and memory definitely feels like its affecting my relatiinship with my girlfriend and with family. I guess another by product is it really makes you an outsider. By medical staff, family, relationships of all sorts. But I know its not depression as the pressure came before any negative effects. And thats why I still know I'm absolutely fine in myself, beacuse I can see it from that perspective. Hope we all get it sorted, good luck
Avatar universal
i have same symptoms like head pressure,problem concentrate,speech and memore, i been feeling like this off and on for 4 years .i am taken amitriptyline for like a year now,first 6 months i was perfect I wasn't in the pain at all and they also help me sleep at night and next 6 months some pressure came back,but it still is not so bad.I also tried feverfew(this stuff works great),butterbur,magnesium .I try to be outside more,fresh air helps a lot and try to eat a little healthier and green smoothie very good for you.Try not to worry and stress out as much about how you feel ,anxiety can give you head pressure to.
Avatar universal
This all describes me spot on. Mine only started a few mornings ago but my here are my symptoms: i have a lot of pressure a little to the left of my forehead and its very scary. It also hurts to look to my left also. I hope we can find a cure to this horrible feeling
Avatar universal
I believe I'm going thru the same thing as u.    I'm going to talk to my doctor and put my foot down.  I'm a nurse which makes me more flustrated. I believe these symptoms are caused by intracranial hypertension.   Look it up on your computer and tell me what u think

Thanks, senaka
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I kind of got over the flu,three days ago.well last Thursday I started with the flu.head dizzy,fever of 103 cold chills one minute next minute I'm hot body aching,sweat,head hurting,I was completely miserable.well three days a go I started feeling better but I had this hurting pain in my forhead,it felt so tight the feeling was so strange I felt sick to my stomach.now I still feel the tight feeling in my fathead with alittle pain do you have any idea what it could be????please help I'm so stressed out!! :-(
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By any chance did anybody have a history of  anxiety, panick attack and or anxiety attacks?
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has anyone found a cure??
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I have had the same syptoms for about ayr and its gradually getting worse..heartbeat n head but no pain,dizzy,tired,feeling..its brutal..ive had mri,ct scan,blood test and all came back normal..the only thing that works is lots of alcohol..please help??
Avatar universal
My symptoms include:
-dizziness(asif the rooms moving)
-very tired
-pressure/burning in my head
-severe pain in my head, neck and legs
-blocked ears and nose
I am 19.I have recently been referred to a neurologist and will have my first mri on the 18th. I have been suffering with these symptoms plus others for 4months now, my gp signed me off work so I am currently on the sick. I have passed out and been sick which is the main reason I went to my gp but he seemed more worried about the pressure or severe pain in my head. Sometimes I get a feeling like I'm in my own world and things around me are a blurr. Does anyone have any idea/advice on what might be wrong?
Avatar universal
Hello everyone,

I am glad to see that other people are having the same problem that I have been having since March 24th, 2012.  There was a moment, a clear defined switch that occured on that day where I had my first panic attack ever.  After that moment, I have had panic attacks, dream-like-state all day, night terrors, hyper sensitive to sounds, tunnel  vision, heart palpitations, derealization, forgetfulness, memory blanks, speech difficulty, feeling like I am talking to people but I am not really there.  The unsettled feeling that I might go into a coma if I relax too much when going to sleep.  When I wake up in the morning, I tend to feel fine. As the day progresses, I start to feel off again and very tired.

I am now 22 going on 23 and this has been happening for a little over a year.  I have had an MRI, countless blood work, and EKG's.  All showing normal.

The first 5 months were horrible.  I felt like I was going crazy.  Now, I have not had a panic attack in 8 months and I have a pretty good grip on things.  The best thing to do is just accept what is happening and get used to it.

Exercise has helped.  Alcohol seems to make me feel "normal" again but I get wary of this because my father was an alcoholic.  Advil helps when going to sleep. Sometimes when the weather is cool I can feel a "cracking"/poping sound in my head and I feel great!  I know there is some hope for the future. Time heals all wounds.  I have had a sinus infection since before this occurred and it never really went away. My sense of smell is barely there.  On those off days though when I can smell the fresh air and the flowers I feel great!

I believe this is definitely sinus related and potentially vitamin related.  Did any of you get your vitamin D levels checked? I was at 19 (VERY LOW).  Now I am taking vitamin D3 supplements at the 2,000 UI's a day level and I already feel a little better.
Avatar universal
Hit the nail right on the head! The masses of SOCIETY IS effectively BEING ROBBED OF it's MENTAL RESOURCES, and TOXINS ARE one of THE PRIMARY REASONs for IT and SHOULDN'T BE OVERLOOKED. I like to believe that EVERYTHING YOU FEEL IS SUBJECT TO WHAT YOU PUT IN YOUR SYSTEM and a number of external factors. GO ORGANIC.
Avatar universal
I'm 17 years old and i eat a decent diet, i'm what would seem healthy i do a few hours exercise each week, always had a normal social life, previously suffered with anxiety which the doctor prescribed a tablet for reducing my blood pressure in attempts to stop the flaring of my heart rate when it started. I overcame the anxiety without the tablets as they gave me horrific dreams which left me refusing to sleep until i experienced sleep paralysis (which may i add both times was awful). I rarely experience panic to the same level as i did before but i have been referred to a counselor to speak about how to deal with my mood dives, which is what me and my doctor are calling how i see no point to the repetitiveness of life and its bores.

i suffer similar headaches to first described, i just feel throbbing pressure behind my forehead and sometimes its like the same pressure expands around to my temples. Difference is it usually only lasts for a period of 15 minutes but i have about 4 a day minimum.

I also suffer from pins and needles, tingling and limbs going dead like there is no blood getting to them for no normal reason i could be standing sitting or laying and its numb and takes minutes to recover.

I stuffer from clouded thoughts, not quite memory loss just vicious forgetfulness, lack of concentration which makes working very difficult im currently working 46 hours a week business administration. Which makes my forgetfulness and lack of concentration exceptionally difficult to deal with.

My eyesight falters repetitively, my left eye almost feels fuzzy but i have come out of all my previous eye tests with described as perfect vision, but falters throughout the day. I struggle to read very often as my eyes struggle not only to focus but to place items sometimes sure if its my eyes or my brain displacing whatever i try to concentrate on.

I have aches pains in joints but more often muscles, my lower back was aching horribly but more recently taken over by my legs.

Fatigue growing (maybe im just a teenager) but its more of a drained feeling all of the time, when im out, when at work and i know it could be part of my depression but i dont suffer from being a complete grouch i just suffer with life motivation (most days) i wish my bed would eat me i dont even want to be asleep i just want to lay.

My neck strains itself throughout the day i can feel the tension constantly and have done for over a few months, my jaw has been locking for about 4 months.

the second a stressful situation arises i either find a pressuring headache and complete clouded vision i dont know what to do where to look i usually cant speak and sounds the light all have to go, my workplace think im mad because the moment it hits i find my head in my hands pushing my ears with all the force i posses trying to block everything out and squish my head back in. i dont like admitting it to people but i cry alot, i sometimes feels like a relsease sometimes it feels the opposite, but i dont know what to do with this pain and confusion all the time.

i never know how to describe being dizzy sometimes in a dreamlike state its just not everything feels real and i sometimes almost act out as if it was a dream, my head nearly always feeling like theres an air bubble or draft around it like im swaying and with my p*ssing eyes most of the time i feel i stumble just making normal trips.

I dont know what could cause all these things maybe theyre unrelated maybe im just a nutcase maybe im on the verge of a breakdown. but i know whatevers causing me pain and confusion isnt killing me so im just existing with it constantly days are blurring together and it all feels more pointless
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.  
Avatar universal
Has anyone found a solution to this? I've been suffering for almost 1 year now and I can't take it anymore...Citizen T described perfectly what I'm going through!! Please help
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Dear Doctor,
I've had neck swelling for 2 years and the back of my head went numb from loss of blood flow and I was disfigured and lost my sight from Bell's Palsy.  I began taking rocephin+gentamicin+clarithromycin and for 8 days I had neck pain and the swelling went down some.  I am waiting for a Lyme Elisa test and have been disabled from brain fog and central apnea, PLMD seizures, hypnic jerks.  
what kind of infection do I have?  Thanks so much
Avatar universal
I just pecked away for an hour an a half laying the ground work of a lifetime of uncontrollable. Hypertension, life threatening Pulmonary Embolism, a heart attack followed within a month by three strokes that created 100% memory loss for me and put me in a wheelchair for two years and I got out through shear determination and hard work. During the early years of heart Desease I devolved Parkinson's Desease and Rheumatoid   Arthritis. I was just getting to the comparison where I complained to my Doctor that I felt aware of my brain and it felt like it was floating around in my head touching my skull in my temples and in the top of my head and it only did this when I get up and walk around. I also become very dizzy and sometime a little nauseous.
But the mist miserable I have ever been is in late évening and sometimes into early morning when I fall asleep for a couple of hours or longer and then wake up I am in such pain I can almost not tolerate it..I feel like thousands of pins are sticking me in my forearms, back, waist, buttocks, and legs down to the tops and bottoms of my feet. It is a sickening pain that makes me angry at myself and the world. The dizziness is getting worse and I have no stamina or endurance. Can someone help me ?
Avatar universal
I can empathise with all these symptoms as I seem to have most of them (or a variation of them) and have had for the past 5/6 years.  My doctor has quite literally told me he can't do anything.  These symptoms have gradually become worse over the last six months, he has put most of these down to arthritis in my neck/head and a drop of 30 degrees in blood pressure when I stand up.  I quite literally feel like I am going mad.  I've been prescribed Nortriptyline (which in itself can cause some of the symptoms), Amitriptyline (which cause hallucinations).  None ease the lightheadness, nausea, out-of-control/dying feeling.  Surely there are some specialists out there that can help? Here is a list of my symptoms which occur all day everyday!
Headache, front of skull, top of skull, temples.
A constant crushing sensation in the skull, like it's going to explode.
Stabs of pain all round the skull.
Cracking noise and a flash of bright lights when trying to go to sleep, in my head, between my ears.
Feeling as though walking on a spongy surface, floor coming up to meet me and the walls moving around.
Feeling as though on a fairground ride, going up and down, causing nausea.
About to feint all the time.
Palpitations constantly, but can't have any more Propanalol because it causes my blood pressure to drop even more.
Pounding in the ears.  Can't stand high-pitched noises or bright lights of any kind.
Pins and needles in hands and feet.
And here's a funny one - can't sit on the toilet without feeling as though I'm falling down it and my body keeps readjusting - crazy I know.
Any ideas anyone!
Avatar universal
Do you have brain fog?
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I am 22 years old and have been experiencing this pressure in my forehead for 6months now all day everyday I too have had blood work and scans done, during the second month I had gotten extremely sick every morning and all symptoms would go away in the afternoon i had experienced this for about a month and now it is back to just the pressure all day long it now moves to my back teeth to my forehead I am on nortriptyline and I take magnesium I also have been on a homeopathic cleanse although I'm not a 100/   I HAVE BEEN FEELING  BETTER
Avatar universal
Id also like to say this all started with a huge panick attack, also if anyone does comment please include what if any drugs you were taking ex: weed,coke. I smoked weed for three years heavily and I had to stop it brings on the pressure in the most intense way
Hey, did you ever get an answer? The same thing happened to my ex, she's still going through it. She had pot brownies and was taken to the hospital because she was having panic attacks. It's been almost a year and a half and she still has this pressure/twisting sensation in her head and nothing seems to help. Steroid shots don't do anything and her doctors tell her that its all in her head, but she cries out in pain everyday. You cannot fake something like that. We cannot find any answers and she's getting frustrated and down
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!
15160834 tn?1438811873
me, too

15160834 tn?1438811873
Migraine w/aura for 2 weeks.   Sinus Headache also.
No meds help - not even Norco.

Maybe future change of weather.
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!
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 ?
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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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
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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.
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
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
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.
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.
Avatar universal
20189950 tn?1492058921
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
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!
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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
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
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
Avatar universal
Get a hair mineral analysis.. 150$ on ebay... Heavy Metals are the problem...  Good Luck
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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
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
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.
If this is in answer to my comment. No, I am not dehydrated also I wear a hat in cold weather too.
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!
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
Memory loss
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:

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so what is the diagnosis for the headaches, sinus pressure that is not from your sinuses??
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