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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Profile picture for deblee @deblee

@robin76
I am so sorry you can’t get relief. Doctors like to blame many things on anxiety. I have the same symptoms as you along with balance problems. I do have a meningioma near my cerebellum but doctors also say my symptoms are from anxiety. Hope you can get some answers.

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@deblee doctors always say anxiety. Just brush us under the carpet

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I can relate to all as I have Trigeminal Nerve Pain which then caused Hypnic Headaches…Hypnic Headaches only occur when you are sleeping. I am doing the Botox thing and have had three rounds. It’s not totally effective. However, thru my own research I have found a good nerve pain treatment called the Scrambler Technique thru the Mayo Clinic.. Additionally I have found a small clinic in Clifton, N.J. that does the nerve pain treatment. Non -invasive and doesn’t hurt…and is 90% effective. Unfortunately, my head pain is doing me in. Just took 40mg of Prednisone and it’s barely working. And now read about the Central Sensitization. I will do more research about the concept and the doctor. I used to be a gym rat and worked out all the time. I’ve stopped working out because of the headaches and think there may be a direct link to not working out!! For nerve pain, the clinic in New Jersey is http://www.calmaretherapynj.com

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Profile picture for duchess926 @duchess926

I can relate to all as I have Trigeminal Nerve Pain which then caused Hypnic Headaches…Hypnic Headaches only occur when you are sleeping. I am doing the Botox thing and have had three rounds. It’s not totally effective. However, thru my own research I have found a good nerve pain treatment called the Scrambler Technique thru the Mayo Clinic.. Additionally I have found a small clinic in Clifton, N.J. that does the nerve pain treatment. Non -invasive and doesn’t hurt…and is 90% effective. Unfortunately, my head pain is doing me in. Just took 40mg of Prednisone and it’s barely working. And now read about the Central Sensitization. I will do more research about the concept and the doctor. I used to be a gym rat and worked out all the time. I’ve stopped working out because of the headaches and think there may be a direct link to not working out!! For nerve pain, the clinic in New Jersey is http://www.calmaretherapynj.com

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@duchess926, if you're interested in finding out more about central sensitization syndrome on this Mayo blog:
- Chronic Pain & Symptoms Rehabilitation Blog https://connect.mayoclinic.org/blog/chronic-pain-symptoms-rehabilitation/

See specifically this blog post:
- What is Central Sensitization Syndrome? https://connect.mayoclinic.org/blog/chronic-pain-symptoms-rehabilitation/newsfeed-post/hello/

And video with Mayo Clinic's Dr. Sletten

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Profile picture for Rachel, Volunteer Mentor @rwinney

Hi @ellesea01, what did you find most interesting?

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@rwinney - hi Rachel,

This 22 minute vid was interesting to me in several ways. Dr. Sletton covered a lot of ground and was able to do so in a practical step by step manner. As a multi year sufferer of pain I appreciated the way he described topics that kept my interest & made sense. Pain sufferers recognize that pain interferes with every aspect of our lives. Focusing on the whole person not just specific body parts and symptoms makes great sense. The broader perspective view strikes me as more likely to assist a lot more of us. Also the mix of spoken info, dividing info into relative groups on the white board is very helpful. Visual, audio, content lists on the board helps people learn. He presented excellent points in an entertaining way. Wasn't bored & reviewed some areas several times because I was interested not bored. Even the sound of the markers on the whiteboard helped me enjoy the material presented. Who'd of thunk right ✅️ ?

Thanks for asking & thanks to all those at Mayo Clinic for all the great work you're doing.

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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 We found a solution to our 17 yo daughter's excruciating pulsing head pressure and loud tinnitus. Sharing in case it may help.

Background: She has Ehler Danlos and everything started when she caught Long COVID last yr. Weak connective tissue on her neck from eds, aggravated by viral inflammation and a 2 mo steroid prescription led her to feel like her head was too heavy for her neck. Diagnosed with atlantoaxial instability and mild craniocervical instability, and something called a craniocervical pannus. It's a callus that forms when the disks at the top of your spine are bumping into your brain stem because your neck ligaments are weak. If you have any base if skull pain, you may look into CCI and aai. This callus narrows the spinal canal at the base of the skull and can cause serious vascular problems ...

Symptoms / problem: please look into rcvs. Reversible cerebral vadoconstricting syndrome, and relatedly a condition called PRES. I'm the last decade they're discovering that the veins (particularly in brain, but also peripherally) can fall into a pattern of repetitive constrictions. Vasospasms. Can lead to cranialvascular hypertension (with the pressure she could literally feel the pulsing on her temple ... Would vibrate your hand to touch her temple). This can lead to thunderclap headaches and in worst cases to neurological damage. People most susceptible to rcvs have dysautonomia and vascular / endothelial problems.

Our solution: I'm not a medical doctor, but have a PhD, so when my daughter was in the worst pain I've ever seen anyone in and at times we feared for her life (and ERs did nothing, just sent a psychologist ...), I read every medical paper. Her neurologist also wondered if it could be rcvs, but had no experience and couldn't help. We got rid of the pressure, pulsing and tinnitus by removing all triggers that can cause rcvs or vasoconstrictions, and introducing supplements that are vasodialating or gently reducing inflammation. Daughter also does take 10 mg propranolol in the evening, which helps calm and heal her veins overnight. Get rid of nsaids, SSRIs, triptans, opioids, stimulants like coffee / green tea. Some acne meds are vasoconstricting. CBD products and creams are vasoconstricting and can cause pulsing cranial pressure. Look for a full list of Rcvs triggers. We even had to remove mint tea from her diet. Nsaids are a key trigger. That Ibpuorofen they'll give u in the hospt when they think you have a migraine is big trigger for vasoconstrictions.

Introduce beet root pills (they boost nitric oxide, good for veins), use feverfew or Tylenol if u must take something for head pain... But better to not take them. Because all pain pills have a kickback that can induce headaches. Instead take magnesium (citrate or oxide). Bathe in an Epsom salt bath for body ache relief. But in lukewarm water (daughter uses space heater to keep the room warm), because submerging in warm or hot water is also an rcvs trigger. Take vasodialating teas like lemon balm, chamomile. Anti inflammatory supplements that aren't vadoconstricting are also good - boswellia, Curcumin, pine bark (get high quality brand, they're clinically shown to reduce inflammation and nerve pain).

Main point is that this throbbing cranial pressure and tinnitus is somehow being caused by a vascular issue. It's the veins, you have to calm them down. You should get an MRA / Mrv to make sure u don't have any blockage.

We were at the end of our ropes. But within a few weeks of doing this protocol her head pressure, pain and the tinnitus was gone.

REPLY
Profile picture for mensch00 @mensch00

@robin76 We found a solution to our 17 yo daughter's excruciating pulsing head pressure and loud tinnitus. Sharing in case it may help.

Background: She has Ehler Danlos and everything started when she caught Long COVID last yr. Weak connective tissue on her neck from eds, aggravated by viral inflammation and a 2 mo steroid prescription led her to feel like her head was too heavy for her neck. Diagnosed with atlantoaxial instability and mild craniocervical instability, and something called a craniocervical pannus. It's a callus that forms when the disks at the top of your spine are bumping into your brain stem because your neck ligaments are weak. If you have any base if skull pain, you may look into CCI and aai. This callus narrows the spinal canal at the base of the skull and can cause serious vascular problems ...

Symptoms / problem: please look into rcvs. Reversible cerebral vadoconstricting syndrome, and relatedly a condition called PRES. I'm the last decade they're discovering that the veins (particularly in brain, but also peripherally) can fall into a pattern of repetitive constrictions. Vasospasms. Can lead to cranialvascular hypertension (with the pressure she could literally feel the pulsing on her temple ... Would vibrate your hand to touch her temple). This can lead to thunderclap headaches and in worst cases to neurological damage. People most susceptible to rcvs have dysautonomia and vascular / endothelial problems.

Our solution: I'm not a medical doctor, but have a PhD, so when my daughter was in the worst pain I've ever seen anyone in and at times we feared for her life (and ERs did nothing, just sent a psychologist ...), I read every medical paper. Her neurologist also wondered if it could be rcvs, but had no experience and couldn't help. We got rid of the pressure, pulsing and tinnitus by removing all triggers that can cause rcvs or vasoconstrictions, and introducing supplements that are vasodialating or gently reducing inflammation. Daughter also does take 10 mg propranolol in the evening, which helps calm and heal her veins overnight. Get rid of nsaids, SSRIs, triptans, opioids, stimulants like coffee / green tea. Some acne meds are vasoconstricting. CBD products and creams are vasoconstricting and can cause pulsing cranial pressure. Look for a full list of Rcvs triggers. We even had to remove mint tea from her diet. Nsaids are a key trigger. That Ibpuorofen they'll give u in the hospt when they think you have a migraine is big trigger for vasoconstrictions.

Introduce beet root pills (they boost nitric oxide, good for veins), use feverfew or Tylenol if u must take something for head pain... But better to not take them. Because all pain pills have a kickback that can induce headaches. Instead take magnesium (citrate or oxide). Bathe in an Epsom salt bath for body ache relief. But in lukewarm water (daughter uses space heater to keep the room warm), because submerging in warm or hot water is also an rcvs trigger. Take vasodialating teas like lemon balm, chamomile. Anti inflammatory supplements that aren't vadoconstricting are also good - boswellia, Curcumin, pine bark (get high quality brand, they're clinically shown to reduce inflammation and nerve pain).

Main point is that this throbbing cranial pressure and tinnitus is somehow being caused by a vascular issue. It's the veins, you have to calm them down. You should get an MRA / Mrv to make sure u don't have any blockage.

We were at the end of our ropes. But within a few weeks of doing this protocol her head pressure, pain and the tinnitus was gone.

Jump to this post

@mensch00 And one more thing. The ligament injury in her neck was also causing horrible base of skull pain, but she could not tolerate any of those toxic heavy nerve pain meds. We discovered MLS cold laser therapy, a high powered laser that can penetrate deep enough to improve blood flow and heal ligaments. Regenerative medicine centers have them. She's doing that now, pointed right at the base of her skull, and it is healing the ligaments in her neck. It reduces inflammation very quickly. Provides immediate relief for base if skull pain.

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I can’t begin to tell you how,urchin this means to me that you have provided this information. Spur taken out, cage over c567 , muscles up the side of my neck don’t work. Creating this huge pressure at the base of my skull and it feels like my head will explode. I will show this info to the doctor. Ice is the only thing that calms it down and hubby massage the muscles up the side of my neck … no nerve meds work, sulphites in food has the same effect at the base of the skull in case that helps your daughter to avoid. Sending you all my biggest hug and a huge thankyou. …oh and tell her to get a car with air suspension …I got. 2015 Jeep and it changed my life.

REPLY
Profile picture for mensch00 @mensch00

@robin76 We found a solution to our 17 yo daughter's excruciating pulsing head pressure and loud tinnitus. Sharing in case it may help.

Background: She has Ehler Danlos and everything started when she caught Long COVID last yr. Weak connective tissue on her neck from eds, aggravated by viral inflammation and a 2 mo steroid prescription led her to feel like her head was too heavy for her neck. Diagnosed with atlantoaxial instability and mild craniocervical instability, and something called a craniocervical pannus. It's a callus that forms when the disks at the top of your spine are bumping into your brain stem because your neck ligaments are weak. If you have any base if skull pain, you may look into CCI and aai. This callus narrows the spinal canal at the base of the skull and can cause serious vascular problems ...

Symptoms / problem: please look into rcvs. Reversible cerebral vadoconstricting syndrome, and relatedly a condition called PRES. I'm the last decade they're discovering that the veins (particularly in brain, but also peripherally) can fall into a pattern of repetitive constrictions. Vasospasms. Can lead to cranialvascular hypertension (with the pressure she could literally feel the pulsing on her temple ... Would vibrate your hand to touch her temple). This can lead to thunderclap headaches and in worst cases to neurological damage. People most susceptible to rcvs have dysautonomia and vascular / endothelial problems.

Our solution: I'm not a medical doctor, but have a PhD, so when my daughter was in the worst pain I've ever seen anyone in and at times we feared for her life (and ERs did nothing, just sent a psychologist ...), I read every medical paper. Her neurologist also wondered if it could be rcvs, but had no experience and couldn't help. We got rid of the pressure, pulsing and tinnitus by removing all triggers that can cause rcvs or vasoconstrictions, and introducing supplements that are vasodialating or gently reducing inflammation. Daughter also does take 10 mg propranolol in the evening, which helps calm and heal her veins overnight. Get rid of nsaids, SSRIs, triptans, opioids, stimulants like coffee / green tea. Some acne meds are vasoconstricting. CBD products and creams are vasoconstricting and can cause pulsing cranial pressure. Look for a full list of Rcvs triggers. We even had to remove mint tea from her diet. Nsaids are a key trigger. That Ibpuorofen they'll give u in the hospt when they think you have a migraine is big trigger for vasoconstrictions.

Introduce beet root pills (they boost nitric oxide, good for veins), use feverfew or Tylenol if u must take something for head pain... But better to not take them. Because all pain pills have a kickback that can induce headaches. Instead take magnesium (citrate or oxide). Bathe in an Epsom salt bath for body ache relief. But in lukewarm water (daughter uses space heater to keep the room warm), because submerging in warm or hot water is also an rcvs trigger. Take vasodialating teas like lemon balm, chamomile. Anti inflammatory supplements that aren't vadoconstricting are also good - boswellia, Curcumin, pine bark (get high quality brand, they're clinically shown to reduce inflammation and nerve pain).

Main point is that this throbbing cranial pressure and tinnitus is somehow being caused by a vascular issue. It's the veins, you have to calm them down. You should get an MRA / Mrv to make sure u don't have any blockage.

We were at the end of our ropes. But within a few weeks of doing this protocol her head pressure, pain and the tinnitus was gone.

Jump to this post

@mensch00 thank you so much for writing this. All the GP says to me is up my dosage of sertraline to 100mg and it will get better. I don’t like taking them and I think they could be making it worse. I had MRI last year June and showed no intercranial pressure. Everyone I’ve seen just says anxiety. Take painkillers. I tell them it’s not a normal headache or migraine. The mornings are horrendous and unbearable. Feels like head gonna pop, so heavy. I really don’t know what else to do 😢😢😢

REPLY
Profile picture for mensch00 @mensch00

@robin76 We found a solution to our 17 yo daughter's excruciating pulsing head pressure and loud tinnitus. Sharing in case it may help.

Background: She has Ehler Danlos and everything started when she caught Long COVID last yr. Weak connective tissue on her neck from eds, aggravated by viral inflammation and a 2 mo steroid prescription led her to feel like her head was too heavy for her neck. Diagnosed with atlantoaxial instability and mild craniocervical instability, and something called a craniocervical pannus. It's a callus that forms when the disks at the top of your spine are bumping into your brain stem because your neck ligaments are weak. If you have any base if skull pain, you may look into CCI and aai. This callus narrows the spinal canal at the base of the skull and can cause serious vascular problems ...

Symptoms / problem: please look into rcvs. Reversible cerebral vadoconstricting syndrome, and relatedly a condition called PRES. I'm the last decade they're discovering that the veins (particularly in brain, but also peripherally) can fall into a pattern of repetitive constrictions. Vasospasms. Can lead to cranialvascular hypertension (with the pressure she could literally feel the pulsing on her temple ... Would vibrate your hand to touch her temple). This can lead to thunderclap headaches and in worst cases to neurological damage. People most susceptible to rcvs have dysautonomia and vascular / endothelial problems.

Our solution: I'm not a medical doctor, but have a PhD, so when my daughter was in the worst pain I've ever seen anyone in and at times we feared for her life (and ERs did nothing, just sent a psychologist ...), I read every medical paper. Her neurologist also wondered if it could be rcvs, but had no experience and couldn't help. We got rid of the pressure, pulsing and tinnitus by removing all triggers that can cause rcvs or vasoconstrictions, and introducing supplements that are vasodialating or gently reducing inflammation. Daughter also does take 10 mg propranolol in the evening, which helps calm and heal her veins overnight. Get rid of nsaids, SSRIs, triptans, opioids, stimulants like coffee / green tea. Some acne meds are vasoconstricting. CBD products and creams are vasoconstricting and can cause pulsing cranial pressure. Look for a full list of Rcvs triggers. We even had to remove mint tea from her diet. Nsaids are a key trigger. That Ibpuorofen they'll give u in the hospt when they think you have a migraine is big trigger for vasoconstrictions.

Introduce beet root pills (they boost nitric oxide, good for veins), use feverfew or Tylenol if u must take something for head pain... But better to not take them. Because all pain pills have a kickback that can induce headaches. Instead take magnesium (citrate or oxide). Bathe in an Epsom salt bath for body ache relief. But in lukewarm water (daughter uses space heater to keep the room warm), because submerging in warm or hot water is also an rcvs trigger. Take vasodialating teas like lemon balm, chamomile. Anti inflammatory supplements that aren't vadoconstricting are also good - boswellia, Curcumin, pine bark (get high quality brand, they're clinically shown to reduce inflammation and nerve pain).

Main point is that this throbbing cranial pressure and tinnitus is somehow being caused by a vascular issue. It's the veins, you have to calm them down. You should get an MRA / Mrv to make sure u don't have any blockage.

We were at the end of our ropes. But within a few weeks of doing this protocol her head pressure, pain and the tinnitus was gone.

Jump to this post

@mensch00
Thank you kindly for sharing your story about your daughter with us.
It was extremely informative and you brought up many valid points.
I have experience with Reversible Cerebral Vasoconstricting Syndrome after experiencing a thunderclap headache in 2020 and have never been the same since, it kicked off 9 months of continuing severe migraines. Nothing helped, the doctors stumped as to what medication to give me. I more than understand "head pressure, going to explode", head "spasms" that are excruciating...thank goodness lasting only seconds, any longer it's a definite 911 call.
I will be re-reading your post several times to see if anything can be applied to me and be helpful. Thank you again for taking the time to write your post. I hope your daughter continues to be pain free.

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I am the same no answers either tons of test
yes Head pressure 24/7

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