Head pressure is ruining my life

Hi. I know you posted this a little over a year ago but have you found any relief? I also suffer the same exact thing as you described. All of it to a T. It started suddenly in Nov 2023 and I have zero history of any headache issues. No head trauma or anything not even from years ago. All testing negative and the pressure is so severe and the distress and sickness this has caused me has caused my BP to go as high as 220 but Dr's are insisting this is not BP related. I've been to the ER more times in the last 2 months than in 20yrs and not even the IV cocktails do anything. I spent the entire month of Jan 2024 bedridden because I couldn't even tolerate sitting up. My vision is so bad I can barely see my work computer screen and I worry if my vision is going to be permanently damaged over this. I am scared I'm gonna lose everything over this. I've been at my job for 28yrs ..I'm 55...I can't lose everything over this and I can't afford to live on SSDI and they would probably deny my claim...on top of this I have debilitating back pain with herniated disc's, spinal stenosis, and arthritis so on top of it all I've lost much of my ability to stand or walk. I cannot handle both of these issues. I'm seriously losing my will to live over this. They put me on Quilipia and for a couple of days I had a little relief until I woke up this morning with it as severe as ever. As it stands I maybe get a day or 2 but then it returns and lasts for weeks non stop. 3 months and I just can't do it. I'm just trying to see if a sleep study/cpap will also help.

I have been having this for months. I too have had MRI's and other neuro testing. I am tapering off of a benzodiazepine and believe that part of this symptomology is related to that. Head pressure is very common unfortunately.

Hi amandanap1 - head pressure, visual issues & lightheadness can certainly all fall under the diagnosis of migraine.
Having migraines, I can tell you I had many episodes of feeling like my head was being squeezed in a vise. Or sudden, jolting, severely sharp pains, lasting seconds - if it lasted any longer 911 would have to be called. And I am certainly familiar with horrific head pressure of all kinds. MRIs, CT scans all negative for me as well. My culprit is "migraine" which is not a headache but a neurological disorder/disease. Of course, I see a neurologist but he is a headache specialist as well. Not all neurologists are headache specialists. My story is long...won't go into now but focus on you. I also get "headaches"...I can tell the difference between a headache & a migraine. Two completely different conditions. Why don't you feel your diagnosis is "migraine"? Have you established ongoing treatment care with a neurologist/headache specialist? Have you tried the many "new" migraine medications now on the market? Often it's trial and error to find the medication that truly helps & this can take time. What is your anxiety/stress level? Anxiety affects anything and everything in the body, no matter how seemingly odd. Are you suffering from depression? Are you getting good, quality sleep? Good nutrition? Are you hydrating well? You would be surprised what "dehydration" can do to the body. All your blood work results normal? You must look at your overall physical health status - as well as your mental health status. The mind-body connection is undeniable. Good stress management a must. If you are still in the mud with your health perhaps time to seek out a top level medical center for an evaluation? Johns Hopkins in Baltimore, MD is # 1 in the US for neurology.
Look at the top 10 centers for neurology on US News & World Report's annual medical listings...perhaps 1 would be an easy travel trip for you. Don't continue to suffer. Be proactive with your health. One must be these days.
I have actually flown to another city to get an evaluation at a top medical center for my relentless migraine condition. I wish you all the best...I completely understand your pain and angst. I am living it as well but trying to do everything I can to overcome the cards I've been dealt. It's a daily battle. Hang in and hold on. And don't forget tending to your spiritual life - whatever it may be. It helps for sure.

Very much so. Mine was directly associated with atypical migraine syndrome. Once I had the right migraine medication, the pressure significantly decreased. Best of luck to you.

Hi @milesmy. So sorry experiencing all that. My personal opinion after developing apnea post covid of over 20 episodes an hour, please try to stick with it if cpap prescribed. It can be frustrating finding all the answers while your body adjusts on all levels and hopeful you will glean the benefit of its oxygen and sleep! 🌈

Have you been evaluated for spontaneous intracranial hypotension? Your symptoms sound like my daughter’s.

I am so sorry you are going through this. I know how debilitating and lonely this journey can be. I hope you have found doctors who have helped you by now, but just in case you have not - I wanted to share my experience. I also had severe head pressure (not a typical headache)- along with other symptoms and I was finally referred to Mayo's neurology department and they found that I had a CSF Venous Fistula which was causing a spinal fluid leak. These types of leaks are difficult to detect so most hospitals and doctors are not able to perform the correct tests/procedures to locate this issue. I say that because doctors in my local city thought they could help me, but all the things they did (lumber punctures, blood patches, etc) made all my symptoms much worse. I hope you find the cause of your issues and you can get relief.

@leighannk I just wanted to welcome you to Connect. I agree that Mayo is pretty good at finding the issues that others miss. That was the case for me with cervical spine surgery at Mayo. As much as sharing medical information is needed, sharing compassion goes a long way in helping others find their way. I'm glad you joined the conversation.

Jennifer

tprift...could you share the migraine medication that is working for you?
I have tried so many...and also diagnosed with "refractory" migraines a/k/a as atypical.
It is beyond frustrating, so debilitating to live with this - as you very well know.
Many thanks & continued better migraine/head pressure relief!

Gladly. The medication that finally worked for me was Nortriptyline 50-60 mg a day which is considered a pretty low dosage. Of course, not a 100% relief of everything. My main migraine symptom is vertigo or visual aura with or without head pain. But that head pressure is totally gone over last decade, and these other symptoms very much diminished. My treating Doctor is an otoneurologist who practices at Mass Eye and Ear In Boston.