Head pressure is ruining my life

@briarrose she's not pain free, but the constant pulsing headache is mostly gone now. She still has a lot of brain inflammation. There is an excellent neuro - pain researcher, Jared Younger, who researches neural inflammation and symptom relief for long COVID, fibromyalgia, mecfs, and gulf war patients. He says that the microglia of patients are always flaring... which they should only be doing when you are fighting off a big infection / virus. But they never flare down. So he researches ways to calm down the microglia. People with these autoimmune conditions also have mitochondrial dysfunction and blood circulation problems. Often their brain oxygen levels are getting a bit low, lije when you are hiking in high altitude, and Younger also shows that their us a lot of lactic acid in their brain. This all leads to a feeling that your head is full and swollen. That's why we keep looking into safe anti inflammatories. She also has peripheral neuropathy now, from the months of excruciating pulsing head pain. Looking into getting that treated. Younger's excellent YouTube channel: https://share.google/BDfTtRvrrpKNBWopp

If you have any base of skull pain you could have upper cervical instability. Aside from taking away all rcvs triggers the best treatment we've done has been MLS laser therapy. You can find this at regenerative medicine practices and some chiropractors and orthopedic doctors. It's a very high powered cold laser that can penetrate into your ligaments and improve blood flow and decrease inflammation, promoting ligament healing. She's been doing this twice a week and it has greatly reduced her neck pain, which can also trigger headaches. So she was bed bound ... Stuck lying flat for three mo. But now she is sitting 5 hrs a day and walking around the house. The neck ligament injury had caused something called a craniocervical pannus, which is like a puffy callus at your brain stem (because the top of her spine was bumping into her brain stem, so the body created a callus). But the pannus can decrease blood flow and cause neurological problems. Ask your docs to look for one. Very visible on standard profile brain MRI, but often overlooked. 60 percent of people with rheumatoid arthritis also have them.

I am going through that now Went to Er did all the tests found nothing but I still have this pressure in my head. Told me to go to neurologist who didnt help so now not sure what to do. It happens every couple of years and last a very long time. Migraine meds dont help

@briarrose she's not pain free, but the constant pulsing headache is mostly gone now. She still has a lot of brain inflammation. There is an excellent neuro - pain researcher, Jared Younger, who researches neural inflammation and symptom relief for long COVID, fibromyalgia, mecfs, and gulf war patients. He says that the microglia of patients are always flaring... which they should only be doing when you are fighting off a big infection / virus. But they never flare down. So he researches ways to calm down the microglia. People with these autoimmune conditions also have mitochondrial dysfunction and blood circulation problems. Often their brain oxygen levels are getting a bit low, lije when you are hiking in high altitude, and Younger also shows that their us a lot of lactic acid in their brain. This all leads to a feeling that your head is full and swollen. That's why we keep looking into safe anti inflammatories. She also has peripheral neuropathy now, from the months of excruciating pulsing head pain. Looking into getting that treated. Younger's excellent YouTube channel: https://share.google/BDfTtRvrrpKNBWopp

If you have any base of skull pain you could have upper cervical instability. Aside from taking away all rcvs triggers the best treatment we've done has been MLS laser therapy. You can find this at regenerative medicine practices and some chiropractors and orthopedic doctors. It's a very high powered cold laser that can penetrate into your ligaments and improve blood flow and decrease inflammation, promoting ligament healing. She's been doing this twice a week and it has greatly reduced her neck pain, which can also trigger headaches. So she was bed bound ... Stuck lying flat for three mo. But now she is sitting 5 hrs a day and walking around the house. The neck ligament injury had caused something called a craniocervical pannus, which is like a puffy callus at your brain stem (because the top of her spine was bumping into her brain stem, so the body created a callus). But the pannus can decrease blood flow and cause neurological problems. Ask your docs to look for one. Very visible on standard profile brain MRI, but often overlooked. 60 percent of people with rheumatoid arthritis also have them.

@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.

@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.

@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.