so what is the diagnosis for the headaches, sinus pressure that is not from your sinuses??
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
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!
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.
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
Get a hair mineral analysis.. 150$ on ebay... Heavy Metals are the problem... Good Luck
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
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
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
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!
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
https://nei.nih.gov/health/iih/intracranial
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.
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.
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
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.
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
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.
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 ?
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!
Migraine w/aura for 2 weeks. Sinus Headache also.
No meds help - not even Norco.
Maybe future change of weather.
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!
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