In her last blog, Melissa reported that her symptoms were greatly improved by a spinal patch. She returns with a new blog on high intracranial pressure, and ME/CFS/FM and long COVID.
This is a post on intracranial pressure and its effect on many illnesses and their symptoms. If you’re experiencing any pain or fatiguing illness, please read on. One big but simple question could save years of suffering.
Each time we enter a doctor’s office, our arms are cuffed, and blood pressure checked. It’s common knowledge that high or low blood pressure can cause a variety of symptoms, yet a large portion of the medical community (and I’d wager even more of the general public) pays no heed to cerebrospinal fluid pressure.
Whether you have a severe chronic illness, are mostly functional, have an injury, or no illness at all, please take a moment to learn about cerebrospinal fluid or intracranial pressure and how it may be affecting you, along with millions of others, often without our awareness.
The skull contains a closed system of brain, blood, and cerebrospinal fluid. To maintain intracranial pressure (ICP), a delicate balance must be preserved.
Cerebrospinal fluid (CSF) surrounds the brain and spinal cord, providing protection, nourishment, and waste removal. When something goes wrong—with, for instance, the mechanism that absorbs or drains CSF, the “supply lines” into the skull, illness, or injury—pressure can increase inside the skull, the bone is unable to accommodate expansion and the brain is in danger of getting squished. This is high pressure—intracranial hypertension.
One of the body’s solutions in that case is to leak some of the fluid out; i.e. create a cerebral spinal fluid leak. In some cases, then, a spontaneous cerebral spinal fluid leak functions as a kind of relief valve to let off the pressure and prevent the brain from being too damaged; i.e. it’s actually saving us.
Even in the presence of a leak, though, the brain squish that results from high intracranial pressure can cause neurological and autonomic symptoms (anxiety, depression, memory, processing speed, attention, gut issues, tachycardia, breathing, nerve pain, weakness, etc.). That’s apparently why many people with ME/CFS feel better after a lumbar puncture or spinal tap has relieved some of the pressure.
High intracranial pressure can injure your brain or spinal cord, limit blood flows to your brain, and cause a myriad of symptoms. Low intracranial pressure can cause an even wider variety.
(Recently, I’ve been healing from a cerebrospinal fluid leak that produces low intracranial pressure. CSF is removed from the brain through the venous sinus, but I have something called “venous sinus stenosis”, meaning the flow between my brain and neck is decreased. This narrowing causes a build-up of pressure in my veins which keeps the CSF from being properly removed from my skull, creating increased intracranial pressure (IIH).
That increased pressure makes a cerebral spinal fluid leak (which I’ve had) more likely. When my leak is present, my brain doesn’t get enough fluid, particularly when upright, so it responds to that reduction by creating more CSF. Leakers do better lying down because they get better flows to the brain (no fighting against gravity) – and lying down puts less pressure on the spot that leaks. This is not an intracranial hypotension post, but this little detour shows how the pressure can fluctuate at times. The intracranial hypotension/spinal patch post, which includes the many, many symptoms of low pressure, can be found below.
Intracranial hypertension in adults is usually defined as an intracranial pressure of 250mmH2O or above as measured during a spinal tap or lumbar puncture. An opening pressure on a lumbar puncture is not, however, necessarily a useful guide, as recent findings reveal that the pressure can fluctuate. Positional changes, medications, or the durations between spinal taps can also affect results. It’s actually common to have a normal opening pressure even if you have intracranial pressure issues. Note that your symptoms may fluctuate depending on your intracranial fluid pressure.
Acute intracranial hypertension (IH) can have a rapid, identifiable onset as the result of head injury/brain swelling or intracranial bleeding (aneurysm or a stroke) into the sub-arachnoid space surrounding the brain. In these cases, parts of the skull may be removed to accommodate the additional pressure.
Chronic intracranial hypertension (CH), on the other hand, is a neurological disorder in which CSF pressure remains elevated over a sustained period of time. Causes can include injury, illness, medication, stenosis blood vessel narrowing), and much, much more. If the cause is unknown, it may be referenced as idiopathic intracranial hypertension (IIH) or if secondary to another cause, secondary intracranial hypertension (SIH). (It was previously known as pseudotumor cerebri because it mimicked the symptoms of brain tumors, but this term is out of use.) Intracranial hypertension can be a lifelong condition and may be mild, intermittent, or disabling.
(Please don’t leave, I’m getting to the Big Question soon and it’s important.)
Symptoms will vary. Not every person will have headaches, vision issues, or any of the less common side effects of high pressure. Assumption otherwise is the reason many cases are misdiagnosed.
- Headache, head pressure, or head pain, as with low pressure, is a key symptom of IH. Intracranial pressure headaches may not be relieved by pain medication.
- IH headache may share migraine characteristics, such as light and scent sensitivity, and worsening with exertion, cough, or straining, but migraine should not be accompanied by pulse synchronous tinnitus (see below), or the visual issues excluding the characteristic aura (temporary flashing or flickering objects, usually lasting about 20 minutes prior to migraine onset, and disappearing after head pain begins). IH headache also may not occur in one specific area as migraine does.
- The pain may be located behind the eyes, forehead, one side of the head, back of the head, base of the skull, top of the head, and maybe burning or pressure-type pain, and may be made worse by eye movement. Not everyone with IH has all the head pain symptoms. Any head pain changes related to pressure or positional changes count.
- Vision—IH can cause rapid or progressive vision changes. Vision symptoms may include gray spots, dots, floaters, or dim-outs in one or both eyes, blurred vision, or double vision. Papilledema (swelling of the optic nerve) caused by CSF pressure on the optic nerve and blood supply can lead to vision loss. Not everyone with IH has all the visual symptoms. Any vision changes related to pressure or positional changes count.
- Pulse-synchronous tinnitus (whooshing, whistling, humming, or marching noises in one or both ears that correlates with your heartbeat).
- Fatigue or sleepiness
- Lack of alertness, brain fog, memory or other cognitive issues
- Mood issues including depression, anxiety, irritability, and more, or behavioral changes
- Weakness, issues with movement or speech
- Nerve pain in the neck, shoulders, arms, upper or lower back, hips, legs, or feet
- Neck or shoulder stiffness
- Dizziness, lightheadedness, balance problems
- Numbness or tingling in hands, feet, or face
- Nausea or vomiting
- Clear fluid leaking from the nose (many assume this is only allergies)
- Endocrine issues (due to empty sella syndrome and the flattening of the pituitary gland). Note that empty sella syndrome has been proposed for both ME/CFS and fibromyalgia.
- Exercise intolerance.
Look familiar? I’m sure these symptoms occur in a variety of patient groups, yet rarely are they attributed to intracranial hypertension. One of my first acquaintances with these symptoms since learning about pressure issues was here, in an MS group.
It begs the question: why is this not being considered as a contributing factor in illnesses in which doctors know intracranial pressure plays a role? As far as I can tell, it comes down to this: diagnoses considered rare are disregarded because they are rare—they stay unreported and therefore continue to be considered rare—and though I have no experience in the area, it seems that changing the medical code (especially without pharmaceutical dollars behind a push) isn’t easy. This does not mean the science isn’t there. It only means the response will be slow and likely suffer painful missteps. But we can act on it now.
What does this have to do with ME/CFS or Fibromyalgia?
Once you’ve taken some time to consider the Big Question (it’s coming, I promise), it’s hard to ignore the parallels between ICP and other illnesses. In my post on CSF leaks, I explained how low intracranial pressure mirrored the symptom set of ME/CFS right down to PEM, and that some intracranial symptoms are relieved by pacing and rest because getting flat allows the CSF to resume its place in the brain).
With high intracranial pressure, the increased pressure can force cerebrospinal fluid into nerve root sheaths, causing severe nerve pain that can be relieved somewhat by gentle upright activity, as in fibromyalgia. If nothing else, these similarities could be causing misdiagnosis, and intracranial pressure should be considered as part of standard testing. IIH has been found in COVID-19, and no one can deny the similarities between it and ME/CFS and FM. Indeed, several studies and reports suggest it is present.
The Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia High Cerebrospinal Fluid Pressure Connection
In 2013, a Cambridge doctor named John Higgins found that 20% of 20 people with ME/CFS had high cerebrospinal fluid pressures. He suggested that an obstruction to venous outflows was inhibiting normal cerebrospinal fluid (CSF) flows and causing high CSF pressure.
In 2017, Higgins produced a Medical Hypothesis paper, “Chronic Fatigue Syndrome and Idiopathic Intracranial Hypertension: Different Manifestations of the Same Disorder of Intracranial Pressure?“, proposing that many people with ME/CFS actually have idiopathic intracranial hypertension. While 20% of his ME/CFS group had high lumber pressures, it was the patients without high lumbar pressures that were the most interesting.
Despite the fact that 80% of his study participants did not, according to the medical profession, have IIH, 85% felt significantly better after getting a lumbar puncture. Their headaches were diminished, they felt more alert and their energy was improved. The heightened sense of well-being and health they experienced lasted for weeks for some.
Next in 2018, Hulens produced three hypothesis papers suggesting that many symptoms in ME/CFS and fibromyalgia and other widespread pain disorders could be explained by IIH. Hulens noted that standing or sitting up causes the sleeves of the nerve roots in the spine to fill up with cerebral spinal fluid, putting pressure on those nerves and potentially causing everything from facial pain to gut and leg pain. Hulens also believes that a leaky blood/brain barrier, in conjunction with high CSF pressures, may be causing issues in the brain, including brain fog, in these diseases as well.
In 2020, a large Swedish spinal study found, depending on the test used, that between 55 and 84% of ME/CFS patients met the criteria for intracranial hypertension. IH was by far the most common spinal diagnosis found.
Just this year, Higgins reported that clearing the jugular vein of obstructions dramatically improved the symptoms of a woman with ME/CFS and asserted that “it is probable that many cases of spontaneous CSF leaks, manifesting as the syndrome of spontaneous intracranial hypotension, have IIH (idiopathic intracranial hypertension) as their underlying condition”; i.e. he believes that IH is causing the cerebral spinal fluid leaks found in some people with ME/CFS.
Higgins proposed that many people with ME/CFS simply have an uncharacteristic form of IIH which lacks papilloedema (swelling of the optic nerve) – thought to be a signature sign of IIH – causing it to be missed. He noted that several groups have found that many people with ME/CFS who do not have papilloedema nevertheless experience relief when their cerebral spinal fluid pressure is lowered during a lumbar puncture. Higgins did not mince his words regarding the failure of the medical profession to appreciate the role IH plays in diseases like ME/CFS and FM.
“Specifically, that the criteria put in place to define IIH have led to a failure to appreciate the existence, clinical significance or numerical importance of patients with lower-level disturbances of intracranial pressure. We argue that this has led to a grossly implausible distortion of the epidemiology of IIH.” Higgins
In 2014, over 60% of about 3,000 people participating in a poll on Health Rising reported that their doctor told them that they had high intracranial pressure during a lumbar puncture. Seventy-two percent reported they felt much better or somewhat better after the procedure had reduced their pressure.
Recently, Hulens proposed that high cerebrospinal fluid pressure is also causing empty sella syndrome in ME/CFS and fibromyalgia.
Other additional causes of increased intracranial pressure include:
- Underlying illnesses, such as meningitis, Lyme disease, Coxsackie B viral encephalitis, Guillain-Barre syndrome, infectious mononucleosis, Lupus, Sarcoidosis, Hypoparathyroidism, Addison’s disease, Behcet’s disease. Notice the potential overlaps – three post-infectious diseases and several autoimmune diseases (which could have been triggered by an infection).
- Medications (this is an extensive list, but some major actors are the cyclines—doxycyline, tetracycline, minocycline—or Accutane, Retin A and topical products and face creams, prednisone (which may cause temporarily improved and then severely worsening symptoms), estrogen, and more—Google the medicine with “cranial pressure” to check).
- Vitamin A.
- Cerebral blood clots (cerebral venous thrombosis).
- High blood pressure.
CSF pressure issues may also be aggravated by mechanical problems such as spinal stenosis (spinal cord narrowing vessel) – which has been found in fibromyalgia – and drainage issues with the arachnoid granulations, that interrupt fluid flows and which are made worse by lax dura mater related to connective tissue disorders such as Ehlers Danlos Syndrome (EDS).
Jeff Woods, an ME/CFS patient who recovered after surgery to fix his craniocervical instability, proposed that a “chronic, ongoing disturbance of blood flow and cerebral spinal fluid flow” caused by mechanical issues, which is exacerbated by exertion, causes ME/CFS. He could be right.
It is known that the longer a leak (low ICP) goes untreated, the less pronounced the orthostatic changes can become. Less clear is whether this also happens with high-pressure cases, but it’s worth noting the signs may be clear at the onset (but more difficult to untangle over time).
The Big Question!
Okay, here it is. It’s time for the Big Question. (Trust me, I’m ready for it too.)
The question of position.
If you read my post on CSF leaks, you’re going to remember the mantra of positional symptoms. Surprise! It’s the same question in reverse. (Don’t leave yet—you have to try it!)
Pressure issues may not be part of standard testing, but this simple at-home test could give major insight.
- Stand straight up or lie completely flat (spine straight, no pillow).
Focus on your symptoms. Write them down if you need to—especially given cognitive issues can be a big symptom. (If you’re bedbound, read my post on leaks first.) Think about the entire package: scan the pain in each area of your body. Don’t leave any parts out. Feet, neck, back, and stomach, but especially pay attention to what’s happening in the area of your neck and skull. Think about your mood and the general feeling of wrong or off you may find.
If you’re flat, do you start to suddenly have anxiety? Do your legs become restless or move of their own accord? Do you feel tingling or burning at the top of your skull or ears? Does your vision change? Can you read a spot of text at a distance with the same clarity as before? Are your ears ringing more? Can you feel your pulse in your ears? Is your heart racing?
- Change position, opposite of what you were. If you were standing, get flat. If you were flat, gently walk through the room.
Focus on your symptoms. Do you find relief—even minor—of any of the symptoms you noted before? If you stay in those positions longer, hours or more, does it change your response? If you’re uncertain, watch it for a week. Do you only find yourself weeping uncontrollably after you’ve done a physically demanding project? Do you feel worse after activities where you’re eating restaurant food or indulging in high-sodium meals? Write it down, track it over time, and notice every change in relation to your position, activity, and food.
And here’s the answer to the Big Question:
- Do you feel better when you lay down and stay down? Look into hypotension and leaks.
- Do you feel worse when you’re flat? Look into intracranial hypertension (high pressure).
If you may have low pressure, head to the leak post.
If you may have high pressure, read on.
If you believe you have both, the leak needs to be dealt with first.
- Melissa Wright returns after her spinal patch blog with a new blog on high intracranial hypertension; i.e. high cerebral spinal fluid pressure and ME/CFS/FM. (GIST done by Cort).
- Virtually every time we step into a doctor’s office, we get our blood pressure checked, yet doctors rarely consider checking the pressure of the cerebral spinal fluid that encircles our brains and courses down our spinal cord. Low or high cerebral spinal or intracranial fluid pressure can produce many, if not all, symptoms of chronic fatigue syndrome, fibromyalgia, and long COVID.
- High intracranial fluid pressure (Intracranial Hypertension) can cause neurological and autonomic symptoms (anxiety, depression, memory, processing speed, attention, gut issues, tachycardia, breathing, nerve pain, weakness, etc.). Because the bones of the brain cannot expand to accommodate the pressure, a cerebral fluid leak in the spinal cord will open up to save the brain and reduce the pressure. It will cause problems of its own.
- Intracranial hypertension in adults is usually defined as an intracranial pressure of 250mmH2O or above, as measured during a spinal tap or lumbar puncture. Pressures measured during a spinal tap, though, are not always accurate as they can vary widely within the same person.
- Idiopathic intracranial hypertension (IIH) is a neurological disorder in which CSF pressure is elevated. Many things including injury, illness, medication, stenosis (blood vessel narrowing), and much, much more can cause it.
- The symptoms produced are similar to those found in ME/CFS, FM, and long COVID. Headache, head pressure, or head pain is a key symptom. Note that this type of headache may not be relieved by pain medication.
- As with migraine, light and scent sensitivity, which worsens with exertion, cough, or straining may occur. The characteristic migraine aura is not produced, however.
- The pain may be located behind the eyes, forehead, one side of the head, back of the head, base of the skull, and top of the head, and may include burning or pressure-type pain, that is made worse by eye movement. Changes in head pain that are associated with changing the position of the head are often present.
- Vision symptoms may include gray spots, dots, floaters, or dim-outs in one or both eyes, blurred vision, or double vision. Again, vision symptoms provoked by changes in position could suggest intracranial hypertension.
- Pulse-synchronous tinnitus (whooshing, whistling, humming, or marching noises in one or both ears that correlate with your heartbeat) may also be found.
- Other symptoms include many that are found in ME/CFS/FM, including exercise intolerance, fatigue, brain fog, lack of alertness, anxiety, depression, irritability, weakness, nerve pain, dizziness, numbness or tingling, endocrine issues, nausea, vomiting.
- Why, Melissa asks, given this huge overlap, is this condition not paid more attention in these diseases? She believes that diagnoses considered rare are disregarded because they are rare—they stay unreported and therefore continue to be considered rare.
- Studies suggest, though, that high intracranial pressure and the conditions it can cause such as cerebral spinal fluid leaks, Chiari malformation, and empty sella syndrome may not be as rare as one might think in ME/CFS and FM.
- Two researchers (Higgens and Hulens) have separately been producing reports over the past ten years which suggest that intracranial hypertension may be greatly underdiagnosed in these diseases. While Higgens, for instance, found high opening CSF pressures in 20% of his patients in a small study, 80% of those without high opening pressures nevertheless had their symptoms relieved when their pressures were reduced by a lumbar puncture. Higgins believes these people also have IIH.
- Over 60% of people in a 2014 Health Rising poll of approximately 3,000 people reported being told by their doctor that they had high intracranial fluid pressures. Over 70% reported their symptoms were at least somewhat improved following a spinal tap.
- A large 2020 Swedish study found evidence of IIH in between 55 and 84% (depending on the test used) of patients. It also found evidence of increased rates of Chiari malformation – which can be caused by IH.
- Many things can cause IH (see blog) including several associated with post-infectious illness states such as infectious mononucleosis, Lyme disease, Coxsackie B viral encephalitis, and autoimmune diseases. Mechanical obstructions in the spine such as spinal stenosis – which has been found in FM – can aggravate it.
- The Big Question that this post asks involves position – specifically if your symptoms are altered by changes in your position from lying down to standing.
- A simple at-home test can help. Stand straight up or lie completely flat (spine straight, no pillow) and focus on your symptoms (see the blog for details). Then change your position.
- If you feel better when you lay down and stay down – then look into intracranial hypotension (see Melissa’s first blog on the spinal patch that helped her so much. If you feel worse when you’re flat, look into intracranial hypertension (high pressure) – and read on. If you believe you have a leak, note that the leak needs to be dealt with first.
- A diagnosis of IIH is usually established with a neurological exam, followed by imaging (likely MRI and CT). (Note that lumbar punctures may do more harm than good – and intracranial pressure can be gauged during a CT myelogram.)
- MRI findings may include flattening of the pituitary gland, which gives the appearance of an empty sella turcica. In addition, the sclera (white outer layer of the eye) at the back of the eye can appear flattened.
- Feeling better after a spinal tap or lumbar puncture is a sign of high intracranial pressure. Feeling worse for an extended period after a spinal tap could indicate you have a cerebral spinal fluid leak.
- As with leaks, it is essential to find a specialist experienced in pressure issues and armed with the most current information.
- High intracranial pressure can be treated in a relatively easy manner. Carbonic anhydrase inhibitors can reduce spinal fluid, including Diamox (acetazolamide) and the less potent Lasix (furosemide), Topamax (topiramate), and Neptazane (methazolamide).
- Outside of drugs things like reducing sodium intake, avoiding straining, heavy lifting, bending, sleeping on an incline, and others (see the bottom of the blog for more) may be able to help.
- Some more things to check for: If you feel worse—either immediately or within days –after strenuous activity such as lifting, high-stress events, after sneezing/coughing, or bending or twisting you may have a leak or high intracranial pressure, or you may cycle between the two.
- Having an unusual (good or bad) reaction to doxycycline, prednisone, or any medicine that affects cranial pressure is a sign, as is whether caffeine, salt/processed foods or B1 affect your symptoms. (Google the medicine or food with “cranial pressure” to find connections)
- Do you feel worse in the evenings or have vision or head or neck pain changes as the day progresses? Do you feel worse at different elevations or with barometric pressure swings?
- Do you find your mood shifts with your symptoms after these activities? Are your cognitive or neurological symptoms brought on by bending, lifting, twisting, jumping, straining, or Valsalva maneuver? Is some part of your pain positional?
- Do you have unusual scarring, stretchy skin, or joint hypermobility in your family? You may have a connective tissue disorder, making leaks and pressure issues more likely.
- Do you ever feel anxious or restless when lying down? This may be high pressure urging you to get upright (to ease pressure in the skull). Do you ever find relief by lying flat? This may be low pressure returning needed fluid to your brain.
- Useful links – Intracranial Hypertension Research Foundation (information on IH) / Spinal CSF Leak Foundation Physician Directory (doctors experienced in intracranial pressure issues).
To diagnose IH, your doctor may start with a general exam or neurological exam, followed by imaging (likely MRI and CT).
It is important to note, again and with emphasis, that lumbar punctures may do more harm than good. Please look into the risk and understand that many doctors are not aware of the most current information regarding ICP. Opening pressure may be gauged during other procedures, like a CT Myelogram, with the proper type and gauge of the needle. A non-invasive helmet system is also apparently being developed. Though lumbar punctures may not be an accurate assessment for all pressure issues, there is an option of monitoring systems (but ideally it can be diagnosed with the least invasive tests).
MRI findings may include flattening of the pituitary gland, which gives the appearance of an empty sella turcica. In addition, the sclera (white outer layer of the eye) at the back of the eye can appear flattened. High pressure may be hereditary, depending on the underlying cause. Imaging may only be one of many tools your doctors use to determine your underlying cause.
Did you feel relief after a lumbar puncture? This may indicate high intracranial pressure. If you eventually resumed your baseline afterward, that’s expected.
Did you feel worse after lumbar puncture? If you felt substantially worse over the following weeks or months, you may not have healed and have gone into low pressure with a leak, or you may already have been leaking. (Get flat and read the leak post now!)
Chiari and Brain Sag—Congenital, Leak, or Downward Pressure?
According to studies, over time, IH may also cause an acquired Chiari malformation. Acquired Chiari (or brain sag) may also be the result of low fluid, such as CSF leaks, LP shunts, or multiple spinal taps. A 2020 Swedish study found that 17% of ME/CFS patients may have a Chiari malformation.
Per the IHR Foundation, research suggests that an acquired Chiari malformation is eight times more common in chronic IH patients who have not had shunting procedures. They also note “additionally, for unknown reasons, certain people with congenital Chiari malformations develop chronic intracranial hypertension, even after neurosurgery (surgical decompression) to remedy any obstruction to CSF circulation.”
- Find out more, including links between IH and hydrocephalus at the Intracranial Hypertension Research Foundation.
As with leaks, it is essential to find a specialist experienced in pressure issues and armed with the most current information. Don’t let the incorrect notion that pressure issues are rare prevent you from finding treatment. If you fit the profile and your physician dismisses the possibility, find a new physician.
- The official ICP diagnostic criteria can be found here.
More connections—high intracranial pressure can lead to leaks. A system under pressure is more likely to create a relief valve, blow a leak, or have issues sealing on its own. Can you see how this is all starting to tie together? An initial illness or injury that creates high pressure can lead to leaking and severe/bedbound patients. Think about your illness progression and consider any signs you may have missed.
How is IH treated?
To treat IH, intracranial pressure must be lowered. Like leaks, this can be done in a relatively easy manner. Carbonic anhydrase inhibitors can reduce spinal fluid, including Diamox (acetazolamide) and the less potent Lasix (furosemide), Topamax (topiramate), and Neptazane (methazolamide).
It is important to understand that while lumbar punctures, or spinal taps, may temporarily ease IH symptoms, spinal fluid regenerates at a rate of .3cc per minute. The body produces, absorbs, and replenishes the total CSF volume several times each day. And, as many well know, lumbar punctures carry the risk of creating a CSF leak that may worsen a person’s condition considerably. The risk is far higher than the reward.
Neurosurgical shunts are an option in certain cases but also carry more risk.
Note: it’s not recommended to take Diamox without a doctor’s supervision. It can deplete potassium or cause other serious side effects if not monitored. B1 or other drugs may also be effective in lowering pressure, but the most important step is to address the underlying cause.
Tips for coping with IH in addition to or outside of medical intervention
- Many people with these diseases increase their sodium intake to help with orthostatic intolerance but sodium also increases intracranial pressure. You might try reducing sodium intake to the minimum daily recommended 500mg and see if it helps. Raise it as you’re able (some may have a much higher tolerance). Be diligent, sodium is in nearly everything. Check your condiments and spices, and read labels and serving sizes on packaged food.
- Avoid straining. No heavy lifting, pulling, etc. Gentle upright activity only. Walking is encouraged.
- Don’t bend over if you can help it (get a stool and lower yourself with a straight spine) and avoid sitting in one spot for long periods (if you’re more functional, you may have noticed this during driving or at events with hard metal benches).
- Sleep on an incline, head elevated and neck not kinked to prevent flow.
- Some people avoid vitamin A foods. Others do well with diuretic foods.
- Watch for barometric changes or hot temps (including hot showers).
- Avoid certain medicines like steroids and cycline antibiotics.
- Avoid Retin A.
- Some people are affected by sugar or caffeine (caffeine affects blood flow in the brain).
- Avoid postures that crimp the neck (like when looking at your phone or tablet).
- Avoid tight clothing.
- Watch for your own triggers, be it food, weather, elevation, or certain positions.
- Know that it may change by factors out of your control.
I’m reposting the questions I shared in the leak post, because they’re important to ask. No matter your condition, pressure may affect you in ways you may not have realized. Even the relatively healthy can be affected by pressure changes (hello, your uncle who could predict the weather with his knee).
Do you feel worse—either immediately or within days –after strenuous activity such as lifting, high-stress events, after sneezing/coughing, or bending or twisting? You may have a leak or high pressure, or you may cycle between the two.
Have you had an unusual (good or bad) reaction to doxycycline, prednisone, or any medicine that affects cranial pressure? Does caffeine, salt/processed foods, or B1 affect the severity of your symptoms? (Google the medicine or food with “cranial pressure” to find connections.)
Do you feel worse in the evenings or have vision or head or neck pain changes as the day progresses? Do you feel worse at different elevations or with barometric pressure swings?
Do you find your mood shifts with your symptoms after these activities? Are your cognitive or neurological symptoms brought on by bending, lifting, twisting, jumping, straining, or Valsalva maneuver? Is some part of your pain positional?
Do you have unusual scarring, stretchy skin, or have joint hypermobility in your family? You may have a connective tissue disorder, making leaks and pressure issues more likely.
Do you ever feel anxious or restless when lying down? This may be high pressure urging you to get upright (to ease pressure in the skull). Do you ever find relief by lying flat? This may be low pressure returning needed fluid to your brain.
Thank you for reading this post. If you find it helpful, and if you’re able, please share your pressure situation in the comments so that the community can better see how much it affects our conditions. And if you’re willing, please share the post to help raise awareness.
- Intracranial Hypertension Research Foundation (information on IH)
- Spinal CSF Leak Foundation Physician Directory (doctors experienced in intracranial pressure issues)
- Melissa’s new website on intracranial pressure and diseases like ME/CFS and FM.