Studies suggest that a different form of intracranial hypertension may be common in chronic fatigue syndrome (ME/CFS), fibromyalgia and migraine.
After digging around several times, the doctor was able to access my spinal fluid and get a sample and I was able to stop squirming. Then Dr. Baraniuk said, “Your lumbar pressure was high.”
Some researchers believe increased cerebral spinal fluid pressure could be producing many symptoms in ME/CFS and FM.
The first part of my first – and, to date only – lumbar puncture was a bit torturous, but the aftermath was nothing but good. Getting rid of some of that spinal fluid seemed to help. In fact, I was having a very unusual experience – I felt relaxed and my mind felt clear. In fact, I couldn’t remember the last time I’d felt this calm. I should do these lumbar punctures more often, I remember thinking.
Apparently, I’m not alone. Dr. Baraniuk said he sees high lumbar pressures “a lot in ME/CFS”.
The Case For IIH in Chronic fatigue syndrome (ME/CFS) and Fibromyalgia (FM)
The idiopathic intracranial hypertension (IIH) story in ME/CFS begins with 2013 with a Cambridge doctor named John Higgins. Higgins found that 20% of 20 people with ME/CFS had high cerebrospinal fluid pressures. He suggested that an obstruction to venous outflows (another blood vessel issue) was inhibiting normal cerebrospinal fluid (CSF) flows and causing high CSF pressure.
In 2014, using a local anesthetic, Higgins performed a jugular venoplasty (insertion of a balloon) in the jugular veins of 14 women with ME/CFS who had evidence of jugular vein narrowing. All patients reported immediate improvement, but all returned to baseline within a couple of weeks.
In 2015, Higgins described a 49-year-old woman with a 20-year case of ME/CFS, triggered by an infection. CT venography revealed narrowing of her transverse venous sinuses – a possible sign of IIH. Her CSF pressure was borderline normal. Draining some of CSF during a lumbar puncture left her feeling well, headache-free, with more energy and less pain for 4 days – after which she returned to her typical ME/CFS state.
After a surgical implantation of stents, she reported that her pressure headaches and fatigue were gone and her aches and pains were improved. She could also concentrate normally again. Interestingly, her CSF pressure only dropped minimally. Higgins suggested intracranial pressure is different and is a more important factor than CSF pressure taken during a lumbar puncture. Two years later, she was still doing fine.
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. He noted that his 20-person study found high lumbar pressures in 20% of his ME/CFS group but 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 was energy improved. The heightened sense of well-being and health lasted for weeks for some.
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.
Then, in 2019, using indirect measures (eyeball diameter, optic nerve diameter), the first large study assessing IIH in ME/CFS occurred. Bragee did not use the gold standard – a lumbar puncture – but he found evidence of IIH in no less than 55-83% of 200-plus ME/CFS patients in Sweden.
(Studies indicate that ultrasounds with optic nerve sheath diameter (ONSD) greater than 5.5 or 5.6 is indicative of moderate to high spinal fluid pressure.)
(Missed?) Diagnosis
Now step into a different world – a world in which IIH is rare, is often associated with obesity in young women, and is diagnosed using complex criteria requiring expensive testing.
The current accepted diagnostic criteria for IIH are convoluted and reflect some of the uncertainty in the field. They state that 1-5 below must be met for a full diagnosis. A probably diagnosis is made if 1-4 are met.
- Papilloedema.
- Normal neurological examination except cranial nerve abnormalities.
- Neuroimaging: normal brain parenchyma without hydrocephalus, mass, or structural lesion, and no abnormal meningeal enhancement or venous sinus thrombosis on MRI or MR venography; if MRI is unavailable, contrast-enhanced CT can be used.
- Normal CSF composition.
- Raised lumbar puncture opening pressure (>25 cm H2O).
Alternate criteria #3: If papilloedema is not found but a sixth nerve palsy is present, and other criteria are met, IIH is diagnosed.
Alternate criteria #4: If both papilloedema and sixth nerve palsy are absent, but criteria 2-5 are fulfilled, a diagnosis can be made if flattening of the posterior globe, empty sella, perioptic subarachnoid space distension, and transverse venous stenosis are found (whatever the heck all that means). The authors noted that the last criteria may be too restrictive.
Hulens suggests other testing including: sensory testing using a pin-prick test, strength testing, knee and Achilles tendon reflexes tests, a tandem gait test, an MRI revision to detect possible nerve root dilations and TCs, NCS/EMG, and measurement of the retinal nerve layer thickness using an optical microscope.
Symptoms
The 2016 Markey Lancet review states that the symptoms of IIH are very variable. Hulens asserts that many of the symptoms in ME/CFS and FM could be explained by high cerebral spinal fluid pressures. He calls the condition “chronic postural idiopathic cerebrospinal hypertension” – apparently because when you stand, your pain usually worsens. Standing or sitting up causes the sleeves of the nerve roots across your spine fill up with cerebral spinal fluid, putting pressure on the nerves and causing everything from facial pain to gut pain to leg pain. Even the cognitive issues could come into play. Hulens also believes that leaky blood/brain barrier, in conIunction with high CSF pressures, causes issues in the brain.
- Stiff Neck – Upper body pain is very common in both ME/CFS and FM. Hulens believes this symptom occurs when the CSF fluid stretches the spinal nerve sheaths at the back of the head and neck, causing the spinal nerves to exit the spinal cord and touch the muscle tissue (ouch!).
- Nerve pain – pinched sensory nerves may be producing pain in the arms, shoulders/upper back, hips/lower back, and legs. Children with IIH used anvils, hammers, and a vise grip to describe their head pain as pounding. Some also experienced photophobia.
- Hulens believes increased IH may be causing degeneration of the sensory nerve roots and could be contributing to the small nerve fiber losses in FM and ME/CFS.
- Gastrointestinal problems – the gut problems in ME/CFS/FM could derive from nerve compression in the lower spine.
- Dizziness and balance problems – cause unknown.
- Endocrine problems – not common in IIH but may occur when CSF causes flattening of the pituitary glands and empty sella syndrome (ESS).
- Pulsatile Tinnitus – too high or low CSF pressure alters inner ear pressure.
- Memory and cognitive difficulties
- Exercise Intolerance
Grossly Implausible Distortions?
“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
Both Higgins and Hulens concluded that the normative values, and thus the diagnostic criteria used for IIH, don’t apply to ME/CFS or FM – or any other condition, for that matter. Hulens calls them “arbitrary“. Both believe that instead of being a static condition, that IIH – as one would think any condition that involves liquid flows – exists on a continuum.
Are outdated, overly restrictive criteria getting in the way of proper diagnosis?
Both believe that chronic, mildly increased cerebral spinal fluid pressures are enough to cause symptoms, that the medical profession got off track with IIH early on, and that the condition is likely much more prevalent than believed.
Even if you meet the current criteria, good luck getting diagnosed. For one thing, because the condition is considered to be rare, it’s rarely looked for. A 2012 review stated that:
“Idiopathic intracranial hypertension (IIH) is a rare disorder that typically affects obese women of childbearing age.”
The upshot is that if you go to a doctor with headache, nausea, and other symptoms, if you’re not an overweight woman of childbearing age, IIH probably won’t be suspected.
Both believe doctors have been too focused on a symptom called papilledema – a swelling of the optic nerve that causes it to bulge into the back of the eyeball which doctors can diagnose in their office with an ophthalmoscope. Most of Higgins’s patients, even those with high CSF pressure, did not exhibit papilledema.
The present criteria do allow people without papilledema to get an IIH diagnosis, but papilledema is so associated with the disease that most doctors probably will not consider IIH without it. Even then, you must meet multiple other criteria such as an empty sella, narrowed veins, etc.
Then, if a lumbar puncture is taken and you don’t meet the criteria (>25 cm H2O), you won’t be diagnosed with IIH. Yet Higgins describe multiple instances when cerebral spinal fluid evacuation significantly helped people with ME/CFS. I know of one person whose severe ME/CFS and POTS virtually disappeared for two weeks following their lumbar puncture.
Causes
According to the Intracranial Hypertension Research Foundation, many factors can cause IIH including, interestingly, infections and infectious mononucleosis, and autoimmune disorders. So can head trauma, stroke, blood clots, drugs (including tetracycline antibiotics), hypoparathyroidism and Addison’s disease.
Treatment
The easiest treatment option is that, if you’re obese, losing weight can help.
Otherwise, the treatment involves some heavy-weight drugs including consists of carbonic anhydrase inhibitors (such as acetazolamide (Diamox), Methazolamide (Neptazane), furosemide (Lasix), topiramate (Topamax) and Octreotide.
Treatments have not been well studied. Acetazolamide or Diamox, the most commonly used drug to treat IIH, is used to treat altitude sickness, glaucoma, water retention, non-glaucoma associated eye pressure, seizures, epilepsy and others. Diamox can cause nausea, vomiting, tingling and numbness, fatigue and diarrhea. Topamax had similar efficacy to Diamox, but with fewer side effects.
Surgical interventions can be helpful but are usually only done in more extreme cases where visual loss is occurring.
The Gist
- Two authors, Higgins and Hulens, propose that increased cerebral spinal fluid pressures; i.e. intracranial hypertension – are common in ME/CFS and fibromyalgia
- Hulens proposes that by pressing on nerve roots and affecting the brain, IIH could cause all the symptoms present in these diseases including pain, fatigue, dizziness, gut issues, cognitive problems
- Both Higgins and Hulens propose that the current criteria of IIH miss many cases of IIH in ME/CFS and FM and other diseases. They assert that IIH exists on a continuum and is far more common than is currently believed
- Bragee found that from 55-83% of ME/CFS patients have IIH
- Higgins studies indicate that even those who do not meet the IIH criteria often benefit from reductions in cerebral spinal fluid
- A migraine study produced a similar outcome
- Treatment options are not particularly inspiring and include strong drugs such as Diamox
- More studies are clearly needed for both diseases.
Conclusion (and the Swirl)
Idiopathic intracranial hypertension is another of those whacky and frustrating conditions which can be triggered in a staggeringly large number of ways. Why it occurs is not clear. On the whole, the condition has not been well-studied, is believed to be rare – and probably isn’t – and doesn’t have a lot of good treatment options.
Do the current IIH diagnoses represent only the tip of the iceberg?
Recent IIH reviews ignored the work done on IIH in ME/CFS and FM (no surprise, there), but if the Bragee study can be validated (and published in a medical journal), it would certainly raise some eyebrows. While placebo-controlled studies are surely needed, on the face of it, it’s hard to refute a study like Higgins’s which found significant improvement following a dreaded lumbar puncture, of all things.
More studies like Bragee’s and Higgins’s would suggest that IIH – a supposedly rare condition – may actually be a relatively common disorder which badly needs a redo of its diagnostic criteria.
Meanwhile it’s, intriguing to see another issue in ME/CFS that’s characterized by possible circulatory/connective tissue problems. The narrowed veins often found in IIH could derive from a connective tissue issue – an interesting proposition given the high incidence of hypermobility and Ehlers Danlos Syndrome that Bragee recently found in ME/CFS. One of the five clusters of ME/CFS patients identified in a 1,700 person Spanish ME/CFS study were characterized by increased levels of ligament and subcutaneous issues, ligamentous hyperlaxity, endometriosis, low Vit D levels and mood disorders.
Could the increased spinal fluid pressure reflect problems in the brain? The cerebral spinal fluid is one of the brain’s main dumping grounds for toxins. Perrin believes that inhibited lymphatic and cerebral flows from the brain in ME/CFS and FM result in increased toxin levels with the limbic system (hypothalamus, thalamus, basal ganglia) most affected.
ME/CFS and fibromyalgia are not the only diseases in which under diagnoses of IIH may occur. Migraine – commonly found in both FM and ME/CFS – presents another intriguing disease intersection. A 2015 study asserted that many treatment-resistant migraine patients actually have what the authors called IIH without papilledema (IIHWOP) – which may be the most common form of IIH found in ME/CFS as well.
The authors found that normalizing intercranial pressures by removing cerebral spinal fluid was an effective treatment for about a fifth of the patients in their study. They stated that IIH (without papilledema) “is much more prevalent than believed, (and) is commonly misdiagnosed as chronic migraine…”.
Orthostatic intolerance may be another condition in which IIH is hiding out. One study found that standing up makes IIH worse, while another, which probably used a questionnaire, found that 9% of OI patients had IIH. That number could rise significantly if the effects of spinal fluid removal were assessed.
Idiopathic cranial hypertension, ME/CFS, fibromyalgia, migraine, hypermobility, EDS…these conditions seem to be swirling around and mixing into each other and that’s a good thing. At some point, the circle will complete.
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What I don’t understand is that spinal fluid returns to its own (pre-puncture) within days. Or is there some new method?
I would really like to know who (doctors) I could consult about this. My symptoms are exactly as described. I take acetazolomide and have for years. I know it’s very early days but I’m 65 now and time marches on.
I find this all fascinating. I had one marvellous year where my symptoms largely cleared up- and it all began when one day, I had a very odd sensation which felt like fluid draining from my head. For the next year, even though still low on energy, I felt like everything was functioning as it should- no POTS, no air hunger, no gut issues, no buzzing in my head, no focus problems/brain fog. All of the ‘tired but wired’ symptoms cleared up and my sleep was deep and refreshing. I was even able to exercise mildly. Unfortunately it didn’t last. I have always wondered what that odd ‘draining’ feeling was at the start of my good year (I have otherwise been sick my entire life). I wonder if it was to do with intracranial hypertension. I also am prone to headaches and a feeling of pressure rising through my body into my head, resulting in a sharp pain, when I do breathing exercises. It seems plausible.
Gemma,
It would be well worth your while to look into a possible skull base CSF leak. This is typically characterized by CSF rhinorrhea, clear fluid, leaking from your nose but it can also simply slip down your throat and it is swallowed. Thinning of the skull base, most typically the ethmoid roof or sphenoid, can cause this leaking and at times can self heal and leak again as intracranial pressures change. This may explain the year of fabulous you experienced. An experienced ENT or neurologist is who you need, specific sinus CT w/wo contrast of the head looking for a CSF leak, an in-office scope may identify it as well. It can be very difficult to diagnose. The gold diagnostic standard is the pledget study which is grueling. Wishing you all the best!
@Nicole
Thank you for your reply to Gemma and your info. about what kind of test(s) and Dr.s to get a proper Dx
on said condition. I am thankful and grateful !? Wishing your and yours I very Merry Christmas ?
It sounds like you did have a leak. The leak probably let the pressure lower for quite a while which caused the normal Feelings to return. Once the leak sealed up then the pressure returned. Have you ever gotten an MRI of your head?
i have all the symptoms above a constant headache fatigue and pulsatile tinnutus my symptoms seem to get worse when i lay down i have always got neck tension and pain i have said to my doctor on many times i believe its to do with spinal fluid and blood flow but its always dismissed sometimes you know your own body but unless you can get someone to understand this i believe i shall suffer for the rest of my life i have been sick with this for 3 years now and its getting worse it was a great article and on the right track lets hope in years to come it is taken serious enough to help all us sufferers
I was diagnosed with FM 23 years ago. At the time, I worked in a University Clinic in which we saw students and general public with chronic pathology. Six months before my illness I had a motor accident – not serious injuries – just a sore neck and mid back. No scans taken. After a few months I developed significant neck pain and various pains, parasthesias and gut disturbances. After months of this I consulted a GP, eventuating in FM diagnosis. I argued with the rheumatologist that I believe the spinal pain (the accident) was the trigger (cause). He argued differently.
Now I know that I am right and I am wrong. I have a genetic disposition to develop FM as a consequence of trauma-leading to chronic pain. My immune system has become involved and does not accept the pain receptors generating the pain, treating the “nociceptors” as foreign and an IGg protein has been developed to treat the nociceptor as a foreign protein – hence the FM.
Terry, I am in the same boat, or was. What has turned out to help me was first a hard neck collar to sleep in, then an Atlas Orthogonal Chiropractic treatment that moved my C-spine vertebra into line. (I do have Cranial Cervical Instability and am only suggesting a AO Chiro, no other type, do your due diligence please.)
I think then in my case, there was space for the CSF to leave my skull, and sleep was possible and life was better.
Challenge for me is those C spine vertebra like to move about.
Good luck.
Cort,
Wow, very interesting and Great Article! A def. major puzzle piece ..
Cort is the gist of what they are saying is that a spinal fluid puncture might work,the best method, less risky to try non-surgery opt. and to try and seek out this Dx..?? Not sure of what kind of Dr. to seek as well?
This fits me as well..?
Btw..I love the idea of an overview someone suggested as my brain is taxed right now..sorry?
There is the option of removing spinal fluid during a lumbar puncture. That would at least tell you if you have this condition. The relief is only temporary, however. Otherwise drugs are used or in rare cases surgery. You might want to check out the Perrin technique and see if that helps.
Clearly the best way to get at this is address the underlying issue which caused this to happen in the first place. Unfortunately we don’t know what that is…but my guess is that something similar is happening in ME/CFS, FM and migraine
That actually may not be the case. I had a high volume lumbar puncture to investigate for IIH and it was only “high normal.” This is apparently common (according to Higgins) in ME/CFS as well as EDS (according to Liu).
It was only via intracranial pressure bolt test that my intracranial hypertension became apparent.
For more on all this, watch Kenneth Liu’s talk here: https://www.me-pedia.org/wiki/Intracranial_hypertension
As far causes, there are many. The structural conditions Henderson talks about in his piece, many of them can cause intracranial hypertension.
Thank you ,Cort! And thankf for pointing me in right direction as I am checking off the boxes of my health history
(Timeline) Merry Christmas!
Thanks Lora,
Good luck and Merry Christmas. 🙂
Thank you
Are there any studies/providers/researchers to contact?
I don’t know of any studies going on right now.
It is very plausible that acute and chronic changes in intracranial pressure (high or low) characterize the “encephalomyelitis” of ME. I find it interesting that only high pressure is discussed and not it’s counterpart spontaneous intracranial HYPOtension (SIH).
Living with an unknown fluctuating skull base CSF leak for 10 years eventually landed me home bound with ME/CFS dx and a participant in the NIH pilot study (the leak was not picked up by the NIH). Six months after that study I was diagnosed with a skull base CSF leak and Vascular Eagles Syndrome (severe internal jugular vein occlusion and vagus nerve compression due to an elongated styloid process bilaterally). Cerebral vascular insufficiency of the IJV was causing rebound IIH after the leak repair which in turn unmasked the vES.
I am yet another example of ME/CFS which has responded very favorably to addressing IIH/SIH fluctuations and structural venous compromise affecting the brain…and thus ALL of me.
My diagnosis came from an ENT very experienced in CSF leaks. Imaging included head and neck CT w/wo contrast, neck vCT with ES protocol, venogram, Doppler flow study with ES protocol w/wo provocative positioning, endoscopy with intrathecal fluorescein and pledget study. This has been a work in progress over the last 2 years as Eagles Syndrome is becoming more understood with relation to IIH. ES is listed as a rare disease, I now understand it is simply “rarely diagnosed”.
There is high-pressure mine was 500+ so No it is not all Hypo it is both. My LP shot across the room settled to still 370. Anormal for Man is around 200 & I still get symptoms with a recorded pressure in Normal ranges…
Nicole, may I ask who did you see for your eagles work up? Bilateral elongated styloid processes were just picked up on my recent cervical CT w/ 3D recon. But it’s like a footnote on a report & no practitioner giving any direction on further tests or even what it means. I have been diagnosed w/ ME/POTS/suspected EDS/IIHWOP. Thanks!
John Higgins is the Neuro Surgeon he is part of the Partick Axon Team at Cambridge the same ones who do Eagles Syndrome surgeries out of Addenbrooke Hospital & IIH
is a symptom of Eagles Syndrome compressed Jugular vein & increased pressure in the spine…People need proper CT Contrast Scan, not MRI & they need Venography CT
This is good news. After Jennifer Brea’s recent surgery my ME doctor is sending me for a standing MRI. I’ve been involved in several accidents causing head and neck trauma.
Will this type of imaging show issues related to itracranial/spinal fluid hypertension? Or do I need to somehow find a specialist hopefully in Canada?
Bragee used MRI to measure eyeball diameter and optic nerve sheath diameter. I don’t know but I imagine those would be readily available.
So it is quite possible since I came down with Glaucome. out of blue..pressure on both eyes relieved with laser surgery ..(holes in eyes) can be considered as a recommendations to get correct Dx tests ..when asking for the referral to said Dr. is well worth mentioning..
I had never heard of Eagles Syndrome. Thanks for mentioning that. Can you say what treatments helped you? Did you get stents?
Eagles Syndrome is an abnormal elongation of the styloid process which can in turn compress neighboring structures ie: vagus and glossopharyngeal nerves, internal jugular vein and carotid artery. Symptoms can include insufficient cerebral vascular circulation (the symptom list is long here as you can imagine), neck stiffness/pain as the styloid can impact the C1 tubercle (trapping the structures noted above), jaw and throat pain (as the styloid can follow the stylomandibular ligament and stylohyoid ligament becoming calcified)
The treatment is removing the styloid from the skull base to the hyoid or mandible (ligament included) thus relieving the compression to the surrounding structures. An intr-aoperative venogram confirmed 100% IJV occlusion, this was reduced with the styloidectomy but the long term compression resulted in scarring of the IJV and required a venoplasty, stent was not used (has a low success rate). This is typically seen on both sides, some need to have it addressed bilaterally.
Thanks so much Nicole. There is so much that can go wrong in that vital area!
It might be worth mentioning that intracranial hypertension can often be a symptom of something else. I had IIH before my craniocervical fusion. My fusion resolved it. Chiari malformation can also cause IIH, as can vascular stenosis, possibly Eagle’s Syndrome, and potentially other conditions. I would not be surprised if cervical stenosis does, too. Whether to manage intracranial hypertension with medications v. surgery depends not just on severity of the IIH but on the underlying cause.
All of these conditions, along with IIH, are found in EDS. All are manifestation of a connective tissue disorder, genetic, acquired or otherwise: https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31549
Thanks Jenny I deeply appreciate it! I so happy to hear your fusion helped you immensely!? Blessings to you and yours!
This has to be THE salient feature in CFS/ME. I’m miffed that it has taken so long to finally, somewhat, acknowledge that. Maybe in a couple hundred years there’ll actually be some meaningful therapeutic remedies.
I’ve also had a neck problem that I have long suspected might be related. I had a motorcycle accident, in the year before the post-viral CFS/ME arrived, and a shoulder has been crooked ever since, affecting my neck; so I’ve been finding this line of research all very interesting.
Readers might not be aware of a recent discovery regarding the mode of the flushing of the brain during sleep. This Qanta article sums it up nicely:
https://www.quantamagazine.org/sleeping-brain-waves-draw-a-healthy-bath-for-neurons-20191216/
As the brain flushing is related to csf pressure, I imagine that some malfunction of the management of that pressure could well result in a failure of the brain flushing; and thus account for the unrefreshing sleep, at the very least.
Colin, I’ve read and watched videos with Professor Matthew Walker, who is Professor of Neuroscience and Psychology at the University of California Berkeley.
‘Why sleep is key to brain health and how to sleep better’ was published by http://www.independent.ie on 21 May 2018.
It’s focussing on the same sort of areas.
Cort,
So if I’m reading correctly your cfs pressure was diagnosed as high when you got your lumbar puncture? Also, are you planning on persueing any further treatments or medications?
=Not really planning to do anything at this point. I wish there were better options…
If your comments haven’t gotten through, I apologize. We are having trouble getting into our admin area to put them through (or do anything else with this website :()
I just finished reading The Driscoll Theory, which discusses a number of these issues. She recommended a trial of acetazolamide as a low-risk way of testing if IIH (ideopathic intracranial hypertension) were the cause of symptoms. I am wondering if anyone has tried this testing method? Also, what experiences has anyone had with using this drug as treatment? Driscoll had a very positive response. I am wondering if this would be worth pursuing…. Anyone?
Interesting!
Hi, yes, was a patient of hers diagnosed w/ IIWHOP by her but Diamox did nothing for me. That was over 3 yrs ago. It’s a relatively simple thing & worth trying. It gave her & her kids their life back. But nothing for me. However, a recent cervical CT w/ 3D recon showed elongated styloid processes (Eagles syndrome) so I tend to agree w/ Jen Brea’s comments (above) about structural problems, just bc Diamox doesn’t work for you does not mean you don’t have IIWHOP caused by something structural that requires surgical interventions (Nicole’s comments above).
Thiamine
Great article!
I have POTS and high Intracranial pressure following a relaired CSF leak.
I use both Thiamine and Acetazolamide as carbonic anhydrase inhibitors. In my case, i have found the literature to be correct that Thiamine is of almost equivalent potency to Acetazolamide.
Thiamine is reported to b a much safer supplement than Diamox and could make a less bleak conclusion to your article?
Can’t find the survey to offer my own remission experience, so here it is: My onset was insidious, rather than acute, pretty well following Dr. Daniel Clauw’s CFS Timeline beginning in childhood. But the dramatic downturn came one morning when I woke up and couldn’t lift my head off the pillow or even a hand. That was 1983 when I was 37.
My only remission was from some time in 1987 until–being really generous here–1989, with many ups and downs along the way. The remission, which I mistook for a cure, came after about three or four years of strict adherence to a regimen of diet and supplements and chiropractic adjustments from a holistic practitioner. (His girlfriend sold the supplements.)
I had been unable to work for four years prior to the remission. Even when I returned to work, it was at greatly reduced capacity both physically and mentally and I could feel myself sliding inexorably downhill with every passing day. Then on May 31, 1994, it was over. Completely and permanently. I was 51.
Now nearing my 75th birthday, I care for myself and two cats who also have significant medical problems. I attend my two grandsons’ soccer games and twice a month participate in a vigil for peace and nonviolence by sitting in a chair and holding up a sign. That’s my life now. The whole thing.
Dear Cort and all the other kind people who posted such wise comments on this thread about intracranial pressure. Despite years of studying about this dreadful condition, I completely disregarded the possibility of high intracranial pressure but it makes so much sense.
I learned years ago that using a hand held massager to my head helped me temporarily so much. And my daughter swears by “Cranio-sacral therapy, which I didn’t appreciate as much as she did. I chronically dismiss the neck pain since so many other parts of my body are out of whack. But I am curious about the eyes.
As I was observing people coming down with this condition and keeping notes upon it, hoping to figure it out somehow, I noticed a lot of people with one swollen eyeball, but not the other. The eye swelling condition did not remain constant for them or me, but it occurred irregularly. Has anyone else noticed that, either in themselves or in others? As an artist, I was very interested in the bulging eyeball and was certain that it indicated something serious but I had no idea what.
I often get an uncomfortable feeling of pressure in my right eye, which is the same one that developed the worst astigmatism of the two, in my teens. I don’t know how the eyeball diameter is related to the CSF pressure but, as it is, does that mean that the epidemic of astigmatism is also related?
Also, I’ve not been tested for intraocular hypertension but it is fairly common. I wonder if it is involved as something that causes intraocular hypertension might, conceivably, also cause the CSF hypertension. As with the eyes, it’s a matter of inflow and outflow.
There is a good introduction to CSF circulation here:
https://www.kenhub.com/en/library/anatomy/circulation-of-the-cerebrospinal-fluid
And another one about “brain lymphatics” here:
https://www.kenhub.com/en/library/anatomy/lymphatic-vessels-of-the-central-nervous-system
Neither article has yet incorporated the recent discovery discussed in the Quanta article above, but the latter seems to indicate that high or low blood pressure, as well as high or low CSF pressure, might result in less efficient brain flushing during sleep; it being, if I understand it correctly, the difference in the pressures that drives the tidal flow, as it were. Might that explain why some of the CFS/ME sufferers tested did not have intracranial hypertension? Or might they have some other failure of the brain flushing? And, as electrical activity is also involved, wouldn’t EM pollution have to be looked at as something might interfere with that part of the sleep dynamic?
A recent paper puts the hypothesis that the eyes themselves have their own glymphatic system that drains waste through specialised channels in the optic nerve. The study was on rodents and requires confirmation but the hypothesis is that the fluid efflux is driven by ocular-cranial pressure difference and light-induced, pupil constriction enhanced the process. So perhaps photophobic CFS/ME’ers with sore eyes might benifit from a bit of strong light and eye movement?
Also, raising intracranial pressure blocked efflux so if that is a common feature of CFS/ME, it wouldn’t be surprising that sore and enlarged eyes might result. Further, the authors suggest, a failure to remove the fluid and metabolites might result in glaucoma.
Find an article about it is here:
https://www.sciencealert.com/eyes-have-a-special-self-cleaning-method-that-s-a-lot-like-the-one-that-brains-use
500+ is what my pressure was first diagnosed settled to 370 after an LP was given 80 mg of steroid Prednisone
Tongue Ties & upper-lower Lip Ties can also cause sleep issues & likely plays a role in IIH I have seen some diagnosed with Eagle Syndrome even sleep Apnea their illness resolved from tongue removals
dr. Hulens is not a man, she is a woman.
I have had fibromyalgia for about forty years. I recently had hip replacement surgery in which I was given an epidural for the first time in my life. During the the surgery my blood pressure dropped to 70/30. After the surgery my blood pressure remained at 70/40 for about a week. Over the next couple of weeks my blood pressure rose to normal levels. I noticed a considerable reduction in the pain at the base of my skull, my sore points dissipated, my hypertensive eye diagnosed as such by an ophthalmologist bothered me less and looked more like my better right eye and my irritable bowel issues stopped as well. I also had had neuralgia in my left arm and thumb that has now disappeared. However, my tinnitis has continued. It almost seems the lumbar puncture seems to have reset certain bodily functions for the better. I know the changes are temporary, but has anyone tried to treat FM through periodic lumbar punctures?