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Head pressure is ruining my life

Posted by amandanap1 @amandanap1, Dec 1, 2023

Hello, im hoping that maybe someone can shed some light on this or offer advice if you have experienced the same thing as me.

For almost a year I have been dealing with unrelenting, severe head pressure. Not headaches, though I do get those sometimes. The head pressure is 24/7 and it lasts for months at a time, I get a week off, then it comes back even worse than before.

My symptoms:
head pressure
lightheadedness
vision disturbances (blurry vision, darkness around the edge of vision)
migraines
It feels as if my head is being squeezed and going to explode. It is extremely difficult to do daily activities, I cant concentrate, its taking my life from me. I have had an MRI, numerous CT scans and a lumbar puncture, all clear. If anyone has gone through something similiar and have found something that helps, I would love to hear it.

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larry68 | @larry68 | Mar 25 11:35am
In reply to @robin76 "Any advice please would be greatly appreciated. 49 year old male with severe head pressure /..." + (show)
Profile picture for robin76 @robin76

Any advice please would be greatly appreciated. 49 year old male with severe head pressure / burning sensation in head. Tinnitus, dizziness, left side of face goes numb, insomnia. Ref to neurologist but told told my GP I have to take Propanolol 3 x a day. That is not a solution for severe head pressure. I’ve been to hospital many times and they say take painkillers blah blah. GP says it’s anxiety bla blah. It’s ruined my life. Can’t do anything.

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@robin76 I don't have the left side of my face go numb but i do have tinnunitis,dizziness and stuttering going on and severe head pressure/burning feeling going on.I hope you find out whats going on.I am doing EEG tomorrow and MRI next Monday to see if they can find something out.

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robin76 | @robin76 | Mar 25 7:32am

Any advice please would be greatly appreciated. 49 year old male with severe head pressure / burning sensation in head. Tinnitus, dizziness, left side of face goes numb, insomnia. Ref to neurologist but told told my GP I have to take Propanolol 3 x a day. That is not a solution for severe head pressure. I’ve been to hospital many times and they say take painkillers blah blah. GP says it’s anxiety bla blah. It’s ruined my life. Can’t do anything.

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Rachel, Volunteer Mentor | @rwinney | Feb 23 1:04pm
In reply to @ellesea01 "Just watched the vid mentioned above by Mayo Clinic's Dr. Sletton. Interesting info." + (show)
Profile picture for ellesea01 @ellesea01

Just watched the vid mentioned above by Mayo Clinic's Dr. Sletton. Interesting info.

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Hi @ellesea01, what did you find most interesting?

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jackbartlett123 | @jackbartlett123 | Feb 23 8:01am

I know you said you got an MRI, but on my first brain MRI they missed my Chiari…

There is a special type of MRI called CINE (moving pictures) that will look at the flow of cerebral spinal fluid, to view any obstructions.

You could ask your doctor for a brain MRI (with & without contrast With CINE) to look at a possible Chiari malformation or Chiari Ectopia, or see if there is CSF obstruction.

I had to get multiple brain MRIs in order to properly see the Chiari. It went from not there, to 1 mm, to 3 mm on various Brain MRIs… Also If you do it, go to a hospital in your main city’s downtown and Not the surrounding area. For example, in Atlanta, go to a hospital inside Atlanta, not in the surrounding suburbs. These will have the highest resolution, MRIs and best staff.

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ellesea01 | @ellesea01 | Feb 22 8:48pm

Just watched the vid mentioned above by Mayo Clinic's Dr. Sletton. Interesting info.

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Rachel, Volunteer Mentor | @rwinney | Feb 21 9:14am
In reply to @charl215 "@rwinney yes neurologist and ent surgeon and physiotherapist and sports therapist. Neurologist just prescribes me medication..." + (show)
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@rwinney yes neurologist and ent surgeon and physiotherapist and sports therapist. Neurologist just prescribes me medication but it doesnt do anything been on lots.

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@charl215 So sorry it's been such a struggle. I have empathy for you and understand. I'm wondering if you've seen this video from Dr.Sletten of Mayo Clinic's Pain Rehabilitation Center?

Central Sensitization Syndrome:
Source: YouTube https://share.google/9aBFpl6B3LUpzaq3Q

It may be worth a watch for inspiration and learning about chronic conditions like CSS. I know how daunting it is to keep trying different paths to no avail.

Is pain rehabilitation something you may consider?

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suszy39 | @suszy39 | Feb 18 8:35pm
In reply to @rwinney "Hello @charl215. No worries about the post being old. Yes, for me, learning not to fuel..." + (show)
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Hello @charl215. No worries about the post being old. Yes, for me, learning not to fuel the fire was a helpful first step. In other words don't give attention to symptoms AKA no pain behaviors. Pain behaviors are anything you do say or think that remind you of pain. Don't access the network. Stress management, cognitive behavioral therapy, physical exercise and learning how to properly breathe with diaphragmatic breathing we're all and still are important tools in my management. I realized that less was more in the medicine world and through Lifestyle Changes in forming new habits and the way I viewed pain helped reduce symptoms and gave me more power and tools to learn how to manage. Another important piece is positive distraction. Humor, fun... things that give your brain a vacation because pain is tough and you got to pull out all the stops for it. Hope this helps! Please don't hesitate to let me know if you have questions. Stay hopeful. 😊

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@rwinney I would suggest Clincial Massage Therapy. once a month I go, the best help, relax
she works on my head, shoulders.. Best to you. I suffer from ON very painful, I agree with our attitude can change help or hurt us. I have made a practice of not telling anyone expect my husband I am feeling bad, I know it will get getter, I do take nerve block shorts, do
exercise daily for neck and head. try and relax, it doesn't come easy.
Thinking about you a fellow sufferer. From Northern Ca.

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charl215 | @charl215 | Feb 18 6:21am
In reply to @tamjojoadar "@charl215 I have been thru many many CT Neuroligist. No one can figure me out. Gabipintin..." + (show)
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@charl215
I have been thru many many CT Neuroligist. No one can figure me out. Gabipintin took the pressure to a lessor pressure. So NO they did not find anything and I am on month 9 still trying to figure this out. I had to take up smoking Canibis it takes my mind of the pressure I got off all the meds the doctors subscribed to me and just smoke it is relaxing and so far the best I can do. please let me know if you figured something out.

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@tamjojoadar oh gosh really bless ya. Sorry to hear that im in the same boat another mri scan next week. Will do ill take a note of it and let you know if get anything else. Yes they was going to put me on that and have gave me noritrpyline instead. Ive been on amitriptyline but that made me dizzy. Honestly its constant.

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tamjojoadar | @tamjojoadar | Feb 18 4:38am
In reply to @charl215 "Hi I know this is old sorry but did you ever find out what it was...." + (show)
Profile picture for charl215 @charl215

Hi I know this is old sorry but did you ever find out what it was. Ive had this for like 5 months now head ct ans head mri all clear. Having physio nothing works. Did you find out or something that works thanks?

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@charl215
I have been thru many many CT Neuroligist. No one can figure me out. Gabipintin took the pressure to a lessor pressure. So NO they did not find anything and I am on month 9 still trying to figure this out. I had to take up smoking Canibis it takes my mind of the pressure I got off all the meds the doctors subscribed to me and just smoke it is relaxing and so far the best I can do. please let me know if you figured something out.

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charl215 | @charl215 | Feb 18 3:28am
In reply to @rwinney "@charl215 you say it's been about 5 months, right? Are you working with a neurologist yet?" + (show)
Profile picture for Rachel, Volunteer Mentor @rwinney

@charl215 you say it's been about 5 months, right? Are you working with a neurologist yet?

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@rwinney yes neurologist and ent surgeon and physiotherapist and sports therapist. Neurologist just prescribes me medication but it doesnt do anything been on lots.

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